4get-me-not Alzheimer’s Organization are a Non-Government- Organisation (NGO) in the UAE to raise awareness on Alzheimer’s Disease, to promote quality of life for seniors and provide social support to individuals who are at high risk of dementia. Some of the services provided by the association include:

• Educational events
• Memory cafés
• Meaningful engagements/activities
• Newsletter
• Resources (fact sheets, reading materials)
• Seminars, Webinars & Workshops
• Silver surfing (technology literacy)
• Support groups

Organisation

Country: United Arab Emirates

Postal Address: PO Box 430672 Dubai

Email: info@4get-me-not.org

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Act on Dementia was a 3 year EU Joint Action to promote collaborative actions among Member States to improve the lives of people living with dementia and their carers. Building on the success of ALCOVE (Alzheimer Cooperative Valuation in Europe), the first Joint Action on Dementia, the European Commission supported the launch of a 2nd Joint Action through its health programme. The aim of this 2nd Joint Action was to provide practical guidance for policy makers developing and implementing their national dementia plans, policies and strategies and will focus on four key areas:

• Diagnosis and post-diagnostic support
• Crisis and care coordination
• Residential care
• Dementia-friendly communities

The action was led by the Scottish Government on behalf of the United Kingdom with participation from Bulgaria, France, Greece, Italy, Netherlands, Norway, Poland, Romania, Spain and the Department of Health from the United Kingdom. In addition, Cyprus, Germany, Luxembourg, Malta, Portugal as well as Alzheimer Europe contributed to the Joint Action as collaborating stakeholders.

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Age Exchange provide regular activity and support groups for people living with young onset and family members and friends.

Organisation

Address: Blackheath & West Norwood London SE3 9LA

Country: United Kingdom

Email: hello@age-exchange.org.uk

Call +44 20 8318 9105

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Alzheimer Albania is a non-governmental organisation aimed at raising awareness of all forms of dementia. Some of the services provided by the association include:

• National conference
• Newsletter
• Seminars
• Webinars
• Workshops
• Training for carers

Organisation

Address: perballe Inst.Histori-Gjuhesise, Kati 6 Tirana

Country: Albania

Email: info@alz.al

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Alzheimer Austria is a non-profit association of people with dementia and relatives of people suffering from dementia, as well as people from various professional groups who deal with the topic of dementia. As a self-help organisation, Alzheimer Austria is independent, denominationally and politically neutral. Funding is provided by membership fees, donations, endowments from sponsors, earmarked subsidies and funds from the public sector. The activity of the association is not profit-oriented; the cooperation of the board is based on volunteerism.

Organisation

Address: A-1020 Vienna, Obere Augartenstrasse 26-28

Country: Austria

Email: alzheimeraustria@aon.at

Call +43 1332 5166

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The Alzheimer Disease Research Center at USC is supported by the National Institutes of Health to conduct research on memory problems and aging. Their studies include observational studies that follow participants over time while examining changes that may occur with age, and therapy studies such as exercise training, medications and vaccines. Our goals are to understand the biological changes that may precede worsening memory and to assess whether new treatments including drugs may be helpful in preventing memory or improving memory loss.

Organisation

Country: United States of America

Email: adrc@med.usc.edu

Call (323) 442 7600

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Alzheimer Europe is the umbrella organisation of 37 national Alzheimer's associations from 33 European countries. Alzhiemer Europe is a a non-profit non-governmental organisation (NGO) that aims to provide a voice to people with dementia and their carers, making dementia a European priority, changing perceptions and combating stigma, raising awareness of brain health and prevention, strengthening the European dementia movement and supporting dementia research.

Organisation

Address: 14, rue Dicks; L-1417

Country: Luxembourg

Email: info@alzheimer-europe.org

Call +352 29 79 70

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Alzheimer Iberoamerica (AIB) is a non-profit institution that is an International Federation of Alzheimer's Associations and Foundations composed of full members in 21 Ibero-American countries. Made up of members representing Argentina, Bolivia, Chile, Costa Rica, El Salvador, Spain, Honduras, Ecuador, Nicaragua, Guatemala, Mexico, Dominican Republic, Peru, Puerto Rico, Uruguay, Aruba, Brazil, Colombia, Cuba, Panama, and Venezuela, Alzheimer Ibero-America (AIB) was founded to become a spokesperson and defender of the Spanish- and Portuguese-speaking Alzheimer's Associations. Thier objectives are to:

• Promote knowledge of Alzheimer's disease and other dementias.
• Serve as a liaison platform between its members.
• Unify criteria in public policies.
• Advise and support its members on issues of interest to them.
• Encourage the creation of national associations where they do not exist and the development of existing ones.
• Defend the interests and rights of its members at the Ibero-American level.
• Promote scientific and social research related to dementias.
• Develop strategies for searching for resources to solve the activities of the federation, without affecting the interests of the member institutions.
• Promote international cooperation among those organizations that have the same or similar objectives.

Organisation

Email: juntadirectiva.aib@hotmail.com

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Alzheimer Liga Vlaanderen is the point of contact for people with dementia, their informal carers and everyone who is affected by dementia.

Organisation

Address: 104/4 NL-2300 Turnhout

Country: Belgium

Email: info@alzheimerligavlaanderen.be

Call +32 14 43 50 60

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Alzheimer Schweiz Suisse Svizzera is a NGO officially recognised by the federal administration on the issue of dementia (receiving national subventions and being the main partner in national projects), as well as initiating a National Dementia Strategy and founding a National Working Group of People with Dementia. Alzheimer Schweiz Suisse Svizzera is also a member of Alzheimer Europe. Some of the services provided by the association include:

• Caregiver meetings
• Counselling
• Dementia Care Training
• Educational events
• Helpline
• Meaningful engagements & activities
• Memory Cafes
• Newsletter
• Resources (fact sheets, reading materials)
• Respite care
• Seminars, Webinars & Workshops
• Support groups
• Training for carers

Organisation

Address: Gurtengasse 3, 3011 Bern

Country: Switzerland

Email: info@alz.ch

Call 058 058 80 20

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Alzheimer Sweden is a nationwide patient and family organization for people living with Alzheimer's or other cognitive illness and their relatives. Alzheimer Sweden works with knowledge dissemination, information, counseling and advocacy to make cognitive diseases visible in society. They are members of the global partner organizations Alzheimer Europe and Alzheimer's Disease International, ADI. Alzheimer Sweden’s local associations are based in 11 locations across the country: Borlänge, Gothenburg, Halmstad, Helsingborg – Höganäs, Karlstad, Lidköping, Linköping, Malmö, Örebro, Örnsköldsvik and Stockholm.

Organisation

Address: Karl XII gatan 1 221 00 Lund, Sweden

Country: Sweden

Email: info@alzheimersverige.se

Call +46 (0)46-147318

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Alzheimer's and Dementia Resource Centre empowers caregivers with the knowledge, support and programs to help them prepare for and cope with the challenges that lie ahead. They offer a variety of peer support groups, counseling sessions, educational programs and wellness events to help caregivers with the day-to-day tasks of caring for their loved ones, as well as maintaining their own health.

Organisation

Address: 1506 Lake Highland Dr. Orlando, FL 32803 USA

Country: United States of America

Email: info@adrccares.org

Call 407 843 1910

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Alzheimer’s and Related disorders Society of India (ARDSI) is a registered national, non-profit voluntary organization engaged in the care, support, training and research of dementia since its inception in 1992. ARDSI has been in the forefront to disseminate knowledge about dementia to the public through various forums and is actively involved in developing services like respite care, day care, home care, setting up memory clinic, conducting training programmes for the family members, doctors, nurses and social workers and promote research. At present ARDSI has Chapters in New Delhi, Mumbai, Greater Mumbai, Kolkata, Hyderabad, Chennai, Bangalore, Goa, Coimbatore, Calicut, Cochin, Kottayam, Pathanamthitta and Trivandrum, along with support groups attached to the Chapters.

Organisation

Address: RZ-62/9, Tughlakabad Extension, New Delhi - 110 019

Country: India

Email: nationaloffice@ardsi.org

Call +91 11 2999 4940

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The Alzheimer's Association of St.Kitts and Nevis is an organisation that have created significant awareness about Alzheimer’s Disease and dementia since they started their work in St. Kitts and Nevis, as well as their Fun Day for Caregivers. Some of the services provided by the association include:

• Caregiver meetings
• Educational events
• Meaningful engagements & activities
• Respite grant
• Seminars, Webinars & Workshops
• Support groups
• Training for carers

Organisation

Country: Saint Kitts and Nevis

Email: alzskn@gmail.com

Call (869) 760 -5182

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Alzheimer's Clinical Trials Consortium is a research consortium to provide an optimal infrastructure, utilizing centralized resources and shared expertise, to accelerate the development of effective interventions for Alzheimer’s disease and related disorders. ACTC has 35 Member Sites with expertise in ADRD clinical trials and are selected by leadership, agree to utilize Master Clinical Trial Agreement and single IRB, and receive infrastructure support for a portion of staff and Principle Investigator (PI) time.  The PI from each Member Site serves on the ACTC Steering Committee. Participating Sites are active in one or more ACTC projects.

Organisation

Country: United States of America

Email: waltersa@usc.edu

Call (1) 858-964-0616

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The ADBR program can tailor acquisition of both whole brain and other tissue samples to meet the specific needs of each research project. The ADBR can provide tissue types for a wide range of experimental needs. This includes:

• Fixed tissue, frozen tissue, or fresh tissue shipped on ice in culture media with antibiotics
• CNS and PNS structures – whole brain, brain tissue samples, spinal cord, dorsal root ganglia, peripheral nerves
• Tissues from any body system
• Samples from both AD/ADRD and non-diseased, control donors are available

NDRI’s Human Tissue and Organs for Research Resource (HTORR) Program was recently awarded an administrative supplemental grant from the National Institute on Aging (NIA) to support Alzheimer’s Disease and AD-related dementia (AD/ADRD) studies that require whole brain and other tissues for their experimental analysis.

Organisation

Address: Three Parkway 1601 Cherry Street, Suite 1700 Philadelphia, PA 19102

Country: United States of America

Email: info@ndriresource.org

Call +1 215-557-7361

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Alzheimer's Disease International (ADI) is the global voice on dementia. We raise awareness & support Alzheimer associations & individuals worldwide.Alzheimer's Disease International (ADI) is the global voice on dementia. ADI's works by empowering Alzheimer and dementia associations to advocate for dementia as a national priority, to raise awareness and to offer care and support for people with dementia and their care partners. Globally, ADI strives to:

• Focus attention on dementia
• Maintain dementia as a global health priority
• Campaign for better policy from governments
• Encourage investment and innovation in dementia research.

10/66 Dementia Research Group

10/66 Dementia Research Group

The 10/66 Dementia Research Group is a collective of researchers carrying out population-based research into dementia, non-communicable diseases and ageing in low and middle income countries. This group gets its name from the fact that less than 10% of all population based research into dementia is directed towards the 66% or more of all people with dementia who live in developing countries. The network is made up of over 100 researchers from more than 30 developing countries who are studying the prevalence and impact of dementia in communities where it has not been studied before. The group encourages active collaboration between research groups in different developing countries and between developed and developing countries.

Contact Person / Email
dementiaresearchgroup1066@kcl.ac.uk

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Alzheimer University

Alzheimer University

The Alzheimer University is a series of workshops for national Alzheimer association staff and volunteers to help them strengthen their associations. The aim of the Alzheimer University is to give participants the tools to identify their association’s aims, provide information, raise money and awareness, effectively govern their association and influence public policy. 

This 3-day event kicks off the Membership Development Programme each year for a number of new and developing associations. Selected representatives meet to learn and discuss the best ways to establish their association. The event typically takes place in London, near to the ADI office, providing a great opportunity for the team to meet the attendees and socialise over dinner on one of the evenings. Sessions include:

• Introduction to ADI
• Governance and the role of the Board
• Ensuring effectiveness of your association
• Raising profile and awareness
• Working with volunteers
• Public policy and campaigning, involving people living with dementia
• Providing information
• Working with the media
• Social media
• Setting up support groups
• World Alzheimer’s Month and Fundraisin

Various other Alzheimer University programmes also take place each year for member associations of various sizes and stages of development. These programmes deal with more advanced organisational issues and have a particular focus on one area, for example fundraising, advocacy or public policy.

 

Regional Alzheimer Universities

Every two years, ADI usually organises Alzheimer Universities in conjunction with regional member meetings. These sessions address the issues that our members have raised regionally and aim to provide help and guidance in dealing with some of these concerns. Participants are asked to set objectives at the end of the programme and the associations are followed up on their progress after six and twelve months. ADI financially supports invited participants to attend the Alzheimer University programmes and provides ongoing support after the course.

Address
Alzheimer's Disease International 57A Great Suffolk Street London, SE1 0BB

Country
United Kingdom

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Alzheimer's Disease International Conference

Alzheimer's Disease International Conference

Alzheimer's Disease International holds its international conference every two years. The ADI conference is one of the longest running international conferences on dementia. The conference produces fresh, innovative, and diverse content with a global network of individuals from a multitude of backgrounds. The event brings together researchers, scientists, clinicians, allied healthcare professionals, people living with dementia, family members, care professionals, and staff and volunteers of Alzheimer associations. Its multi-disciplinary approach provides a unique opportunity for delegates to listen to alternative viewpoints and mesh those with their own ways of thinking. ADI believes this crossover provides crucial learnings within the field, as together we are far more powerful than we are alone.

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Co-Designing Dementia Diagnosis And Post Diagnostic Care (COGNISANCE)

Co-Designing Dementia Diagnosis And Post Diagnostic Care (COGNISANCE)

Co-Designing Dementia Diagnosis And Post Diagnostic Care (COGNISANCE) is a 3-year project working in 5 countries. Led by Henry Brodaty in Australia, with partners in Australia, Canada, Netherlands, UK, and Poland. ADI is an external collaborator, the project’s focus is to:

• Co-design dementia diagnosis and post diagnostic care
• Develop a tool-kit to be disseminated internationally
• Develop a set of standards to guide the diagnostic and post-diagnostic process

COGNISANCE aims to improve the communication of dementia diagnosis and post-diagnostic support to co-design and deliver in partnership with people with dementia, family care partners and health care professionals, a website that provides structured information, links, resources and tools tailored to enable health care practitioners to effectively enact national dementia guidelines around diagnostic and post-diagnostic support, and to empower people with dementia and their family care partners seek the support they require. 

Contact Person / Email
m.gresham@unsw.edu.au

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CST International.

CST International.

CST International is a 3 year project will take place over three-years in four phases to develop, test, refine and disseminate implementation strategies for people living with dementia – looking to increase quality of life and cognition, and to increase awareness and skills in the detection and management of dementia.

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Dementia Intersectorial Strategy for Training and Innovation Network for Current Technology (DISTINCT)

Dementia Intersectorial Strategy for Training and Innovation Network for Current Technology (DISTINCT)

Dementia Intersectorial Strategy for Training and Innovation Network for Current Technology (DISTINCT) supports fifteen Early Stage Researchers (ESRs) across Europe, who are carrying out research projects aiming to improve the lives of people with dementia and their carers through technology. Alzheimer's Disorder International is an external collaborator on this project of nine key academic partners. The aim is to develop a multi-disciplinary, multi-professional education and training research framework for Europe aimed at improving technology and care for people with dementia and their carers. ADI offers expertise in areas of community-based practice and national policies through participating in training and education of the early stage researchers (ESRs).

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Interdisciplinary Network For Dementia Using Current Technology (INDUCT Project)

Interdisciplinary Network For Dementia Using Current Technology (INDUCT Project)

Interdisciplinary Network For Dementia Using Current Technology (INDUCT Project) is a partnership across University of Nottingham, UCL, Maastricht University, University of Amsterdam, Karolinska Institutet, Vrije Universiteit Brussel, Charles University, and IDES in Spain that aims to develop a multi-disciplinary, inter-sectorial educational research framework for Europe to improve technology and care for people with dementia, and to provide the evidence to show how technology can improve the lives of people with dementia. Alzheimer's Disease International sits on the project’s supervisory board an provides training a yearly summer school focusing on turning research into policy. ADI also provided internship opportunities for two early career researchers.

Contact Person / Email
Orii.McDermott@nottingham.ac.uk

Call +44 (0) 115 823 1258

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Strengthening Responses to Dementia in Developing Countries (STRiDE project)

Strengthening Responses to Dementia in Developing Countries (STRiDE project)

Strengthening Responses to Dementia in Developing Countries (STRiDE project) is a four-year project to build capacity in dementia research in seven developing countries, in order to support development, financing, planning, implementation and evaluation of national dementia plans. STRIDE is a partnership between the London School of Economics and Political Science (LSE) and the Alzheimer's Disease International to build research capacity, develop research evidence into what interventions work most effectively, and to better understand the impact and cost of dementia. The four-year project aims to develop evidence to support development of national dementia plans and improve quality of life for people affected by dementia. The project works across seven countries:

• Brazil
• India
• Indonesia
• Jamaica
• Kenya
• Mexico
• South Africa

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Twinning programme

Twinning programme

The Twinning programme offers a unique development opportunity for members to enable the most effective sharing of good practice. Taking part in Twinning  and focussing on a specific project helps member associations learn new skills, realise the organisation’s potential and develop valuable connections.Examples of Twinning projects including:

• Creating a newsletter
• Setting up a helpline
• Developing an online event
• Setting up a fundraising strategy
• Organising a Memory Walk.

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World Alzheimer Reports

World Alzheimer Reports

The World Alzheimer Reports are a comprehensive source of global socioeconomic information on dementia. Each World Alzheimer Report is on a different topic, so the previous reports remain important sources of information with global relevance. The reports are commissioned by ADI from a range of highly respected international researchers, universities and authors.

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World Alzheimer's Month

World Alzheimer's Month

World Alzheimer's Month is the international campaign from Alzheimer's Disease International that takes place every September. Each September, people unite from all corners of the world to raise awareness and to challenge the stigma that persists around Alzheimer’s disease and all types of dementia.   During World Alzheimer’s Month, ADI call on everyone, from individuals to large organisations, including every Alzheimer and dementia association globally, to support World Alzheimer’s Month by getting involved in some way.  
 

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Organisation

Address: 64 Great Suffolk Street London SE1 0BL

Country: United Kingdom

Email: info@alz.co.uk

Call +44 20 79810880

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The National Institute on Aging (NIA) funds 33 Alzheimer's Disease Research Centers (ADRCs) at major medical institutions across the United States. Researchers at these Centers are working to translate research advances into improved diagnosis and care for people with Alzheimer's disease, as well as working to find a treatment or way to prevent Alzheimer's and other types of dementia. In addition, NIA funds four Exploratory ADRCs that are designed to expand and diversify research and education opportunities to new areas of the country, new populations, and new areas of science and approaches to research. For people and families affected by Alzheimer's disease and related dementias, the ADRCs offer:

• Read and share this infographic to learn more about how clinical research might be right for you.
• Help with obtaining diagnosis and medical management
• Information about Alzheimer's and related dementias, services, and resources
• Opportunities for volunteers to participate in clinical trials and studies and research registries
• Support groups and other special programs for volunteers and their families

Organisation

Country: United States of America

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The Alzheimer's Disease Sequencing Project (ADSP) is a research project aiming to identify new genomic variants contributing to increased risk of developing Late-Onset Alzheimer's Disease (LOAD), to identify new genomic variants contributing to protection against developing Alzheimer's Disease (AD), to provide insight as to why individuals with known risk factor variants escape from developing Alzheimer's Disease, and to examine these factors in multi-ethnic populations as applicable in order to identify new pathways for disease prevention

Organisation

Country: United States of America

Email: niagads@pennmedicine.upenn.edu

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Alzheimers New Zealand represents people affected by dementia at a national level aiming to create a dementia friendly New Zealand, Aotearoa, he aro nui ki te hunga mate wareware.

Organisation

Address: Level 1, 15 Dixon St, Te Aro, Wellington

Country: New Zealand

Postal Address: PO Box 11-288, Manners St Postshop, Wellington. 6142

Email: admin@alzheimers.org.nz

Call +64 4-387 8264

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Alzheimer's Society is a  care and research charity operating in England, Wales and Northern Ireland for people with dementia and their carers.

Organisation

Address: 43-44 Crutched Friars, London, EC3N 2AE

Country: United Kingdom

Email: enquiries@alzheimers.org.uk

Call 0330 333 0804

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Alzheimer’s Association of Kenya (AAK) is a non-profit Alzheimer’s association that supports people with dementia and their families.  The association was registered in the year 2007 with most of the founding members being individuals who, affected by Alzheimer’s,   felt the need to come together and support others in a similar situation; especially care givers. 

• Advocacy: conduct advocacy by Creating Public awareness for Alzheimers through newspapers (articles on members’ experiences), television (televised interviews with caregivers), brochures explaining the disease and services rendered by the Association (Translated in different local languages to reach different communities) and wrist bands to identify members and patients
• Providing public education on Alzheimers to target groups such as the police, nurses and the general public ( via public transport)
• Education on signs and symptoms of Alzheimer’s, referral mechanisms/procedures, support for caregivers
• Support to caregivers by encouraging and allowing them to talk about what they are going through, assisting with counseling if required (for the caregivers), home visits for people with Alzheimer’s patients for moral support
• Resource centre: a resource centre to provide more information about Alzheimer’s
• Research and documentationof Alzheimer’s in Kenya to inform policy and practice as well as advocate for the provision of services for the affected.

Organisation

Country: Kenya

Email: lizkasimu@yahoo.co.uk

Call 0723 471 096

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The Alzheimer’s Association of Trinidad and Tobago exists to provide support for people with dementia and their caregivers and to improve their quality of life through information, education and the promotion of research. Their services & programs include:

• Monthly meetings in Port of Spain, San Fernando, Arima and Scarborough, Tobago
• Awareness programmes
• Education and training
• Lecture discussions
• Video presentations
• Seminars 
• Workshops
• Fundraising 
• Support for caregivers
• Activities for persons with dementia

Organisation

Address: 15 Nepaul Street St James, Port of Spain

Country: Trinidad and Tobago

Email: alztrinbago@gmail.com

Call +1 868-345-6549

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Alzheimer’s Disease and Related Dementias in Zambia (ADDIZ) is an association ibased in Nakonde, Zambia and is also represented in Ndola, Lusaka, Kapiri Mpishi, Kanchibiya, and Senga Districts. Some of the services provided by the association include:

• Caregiver meetings
• Counselling
• Dementia Care Training
• Educational events
• Meaningful engagements/activities
• Resources (fact sheets, reading materials)
• Seminars/Webinars/Workshops
• Support groups
• Training for carers

Organisation

Country: Zambia

Postal Address: PO Box 430211 Nakonde 10101

Email: info.addiz@yahoo.com

Call {260 97754-842

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Alzheimers Care Armenia is a national organisation that aims to raise awareness and offer solutions for the care and treatment of people with Alzheimer's Disease in Armenia. They create sustainable programs and services for people with memory loss and their families working directly with Armenia's institutions for the elderly as well as develop new programs that increase the quality of care of the person with dementia. Some of the services provided by the association include:

• Caregiver meetings
• Educational events
• Helpline
• Resources (fact sheets, reading materials)
• Seminars
• Webinars
• Workshops
• Training for carers

Organisation

Country: Armenia

Email: drjane@alzheimerscarearmenia.org

Call +1 949-212-4105

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The Alzheimer’s Disease Genetics Global Symposium: Pathway to Translation was a virtual conference has convened the dementia research community to discuss how discoveries in genetics impact biomarker development and target discovery and validation, and how to apply these findings in basic and translational research.

Organisation

Country: United States of America

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The University of Pittsburgh Alzheimer’s Disease Research Center (ADRC) is one of the nation’s leading research centers specializing in the diagnosis of Alzheimer’s disease and related disorders. The University of Pittsburgh Alzheimer’s Disease Research Center (ADRC) is a research centers specializing in the diagnosis of Alzheimer’s disease and related disorders. Through outpatient evaluations, participants and their families receive state-of-the-art diagnostic assessments and contribute to the scientific study of Alzheimer’s disease.

Organisation

Address: UPMC Montefiore, 4th floor, suite 421 200 Lothrop Street Pittsburgh, PA 15213

Country: United States of America

Call +1 412-692-2700

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The Alzheimer's Association is an organisation aimed to accelerate global research, drive risk reduction and early detection, and maximize quality care and support. Through their many initiatives and worldwide reach, the Alzheimer’s Association leads the charge in Alzheimer’s care, support, research and advocacy. The Alzheimer’s Association is the leading voluntary health organization in Alzheimer's care, support and research.

Organisation

Address: 225 N. Michigan Ave. Floor 17 Chicago, IL 60601

Country: United States of America

Call +1 800-272-3900

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The Asian Cohort for Alzheimer’s Disease (ACAD) is an international collaboration with the goal of compiling a robust sample size of Asian American and Canadian subjects for Alzheimer’s disease (AD) research. Making up 6% and 10% of the US and Canadian populations respectively, Asians are the fastest growing populations in both countries yet they are underrepresented in AD research. ACAD aims to address this gap by starting with a cohort of individuals of Chinese, Korean, and Vietnamese ancestry, and later extending to other major Asian populations in both countries. Enrollment in ACAD involves a demographic questionnaire, cognitive testing, and saliva and/or blood sample for genetic analysis. These data will be used to determine the impact of lifestyle and genetic factors on AD risk.

Organisation

Country: United States of America

Email: theacadstudy@gmail.com

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Asociación Lucha contra el Mal de Alzheimer (A.L.M.A.) is the national alzhiemer's and dementia organisation in Argentina. Some of the services provided by A.L.M.A. include:

• Counselling
• Caregiver meetings
• Educational events
• Helpline
• Memory cafés
• Meaningful engagements/activities
• Newsletter
• Seminars/Webinars/Workshops
• Support groups

Organisation

Address: Lacarra 78 1407 Floresta Capital Federal Buenos Aires

Country: Argentina

Email: info@alma-alzheimer.org.ar

Call +54 11 4671 1187

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Association Alzheimer Tunisie is a non-profit association that aims to contribute to the improvement of the care of people with Alzheimer's disease and to provide help and assistance to their families.

Organisation

Address: BP N°116-Cité El Khadra-1003

Country: Tunisia

Email: alzheimer.tunisie@gmail.com

Call +216 98 61 39 76

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Association for Frontotemporal Degeneration (AFTD) is a non-profit organization that envisions a world where frontotemporal degeneration is understood, effectively diagnosed, treated, cured and ultimately prevented. It aims to improve the quality of life of people affected by Fronto-Temporal Dementia and drive research to a cure. We work every day to advance:

• Research: promote and fund research toward diagnosis, treatment and a cure.
• Awareness: stimulate greater public awareness and understanding.
• Support: provide information and support to those directly impacted.
• Education: promote and provide education for healthcare professionals.
• Advocacy: advocate for research and appropriate, affordable services.

Organisation

Address: 2700 Horizon Drive, Suite 120 King of Prussia, PA 19406

Country: United States of America

Email: info@theaftd.org

Call +1 267-514-7221

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Association of Parents, Friends & Persons With Alzheimer (APAZ) is a non-profit charitable association that brings together people, family members, professionals and stakeholders in order to help and there understanding of alzheimer's and dementia disorders.

Organisation

Address: Av. Mal. floriano, 65 - Centro Rio de Janeiro - RJ CEP: 20080-004

Country: Argentina

Email: apoio@apaz.org.br

Call 21 22230440/

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The Australian Frontotemporal Dementia Association (AFTDA) is a non-profit organisation dedicated to raising awareness and providing support to people living with frontotemporal dementia (FTD), either those with a diagnosis and their families, friends, and carers.  The AFTDA is a registered non-profit carer driven organisations whose mission is to:

• Establish Carer groups where ever there is a need in Australia – If you know someone in Australia with FTD we invite their Carers to register her
• Establish a register of FTD sufferers and their primary Carers in Australia
• Coordinate efforts with peak dementia bodies to disseminate information, education and support to persons diagnosed with an FTD disorder, and for their families and caregivers
• Help Educate physicians and allied health professionals about Frontotemporal degeneration and how to improve patient care
• Bring about greater public awareness of the nature and prevalence of Frontotemporal degeneration and the needs of those who are coping with it
• Lobby for and promote more research into finding the cause, therapies and cures for Frontotemporal degeneration/dementia, in collaboration with international FTD researchers and clinicians
• Advocate with public officials and promote public and private programs that provide appropriate, affordable and high-quality, long-term health care and social services
• Facilitate the international exchange of ideas

Organisation

Country: Australia

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Banner Alzheimer’s Institute is committed to ending Alzheimer’s before we lose another generation.  At these centers, people with Alzheimer’s/dementia and their families access a new standard of care that brings together innovative therapies, advanced treatments and valuable resources. 

Organisation

Address: 901 E Willetta St 1st Floor and 3rd Floor Phoenix, AZ 85006

Country: United States of America

Email: bhcorpsocialresponseteam@bannerhealth.com

Call (602) 839-6900

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The Barbados Alzheimer’s Association is an organisation that identifies, develops and promotes programmes to educate the Barbadian public about Alzheimer’s Disease and its impact on family life; 

Organisation

Address: 1-149 Diamond Close, Eating Park South, Christ Church

Country: Barbados

Email: barbadosalzheimersassociation@caribsurf.com

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The Boston University Alzheimer's Disease Research Center (BU ADRC) is a National Institute on Aging Center focused on research aimed at reducing the human and economic costs of Alzheimer's disease through the advancement of knowledge. Established in 1996, the BU ADRC  is one of 38 ADR Centers in the US-funded by the National Institutes of Health to advance research on Alzheimer's disease and related dementias.

Organisation

Address: 73 E Concord St., Boston, MA 02118

Country: United States of America

Email: joinADC@bu.edu

Call +1 857-364-2140

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Cafe Create is a group for under 65s living with young onset dementia and those who provide care as family, friends or staff. All are welcome to join us for activities and support. Cost of £5 per attendee (no additional cost for carers). Please get in touch with Lydia if you are interested in joining.

Organisation

Address: West Norwood Library and Picturehouse, Community Room, 1-7 Norwood High Street London London SE27 9JU

Country: United Kingdom

Email: hello@age-exchange.org.uk

Call 0208 318 9105

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The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium will enroll patients with sporadic and familial forms of amyotrophic lateral sclerosis, frontotemporal dementia (FTD), primary lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), and progressive muscular atrophy (PMA). The goals of the CReATe consortium are to advance therapeutic development for this group of neurodegenerative disorders through study of the relationship between clinical phenotype and underlying genotype, and also through the discovery and development of biomarkers.

Organisation

Country: United States of America

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Dementia & Alzheimer's Support Association of Uganda (DASAU) id sn organisation supporting people living with dementia, their carers, family and friends. They aim to create awareness on Dementia and Alzheimer's disease and to stimulate and/or contribute to research to improve the management, treatment and prevention of Dementia & Alzheimer's Disorder.

Organisation

Country: Uganda

Email: arthurnamara@yahoo.com

Call +256 782 199612

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Dementia Action Alliance is an alliance for organisations across England to connect, take action on dementia and work together to build Dementia Friendly Communities.  A Local Dementia Action Alliance (LDAA) is a structure that provides instructions on how to gather people together, how to have meetings, set terms of reference and so on that allows action areas of each LDAA to be different, chosen by the community as areas of focus. An LDAA is also one way of working to become a recognised dementia-friendly community via Alzheimer’s Society's Recognition scheme

Organisation

Country: United Kingdom

Email: dementiaactionalliance@alzheimers.org.uk

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Dementia Alliance International is a registered non-profit organisation whose membership is exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world . They seek to represent, support, and educate others living with the disease, and the wider dementia community. We are an organization that strives to provide a unified voice of strength, advocacy and support for our rights, individual autonomy and improved quality of life. They provide online support groups and other activities for our members, free of charge in number of different time zones. 

Dementia Alliance International (DAI) is the peak organisation globally representing persons with dementia, and thus widely accepted as the global voice of dementia. They are very keen to represent ourselves in all matters concerning dementia, in the philosophy of “Nothing about us, without us.” Many persons with dementia are very capable of representing themselves, or speaking up for those who are no longer able to do so. Their work on claiming the Human Rights for all people with dementia means we are legally entitled to be included, and not just consulted, or represented by others. They are also entitled to the appropriate disability support that any other persons or groups of disabled people are afforded.

Organisation

Address: C/- Patrick with Durio & Korpal, P.C 6575 West Loop S, Ste 400 Bellaire TX 77401-3512

Country: United States of America

Email: info@infodai.org

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Dementia Auckland provides dementia support services to people with dementia, as well as their carers, families and whanau. Dementia Auckland enables all people affected by dementia to live their best life.

Organisation

Address: Level 4, Suite 5, 58 Surrey Crescent, Grey Lynn, Auckland 1021

Country: New Zealand

Postal Address: PO Box 5132, Victoria Street West, Auckland 1142

Call 0800 433 636

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Dementia Canterbury is an organisation that incorporates a model of Living Well including education and support, planning and therapeutic services, and meaningful activity in partnership with our community. They recognise the need for services to be responsive to people with dementia as well as those who support them. Dementia Canterbury's services cover all of Canterbury including the Ashburton region, North Canterbury, and Kaikoura, as well as the West Coast. 

Organisation

Address: 3/49 Sir William Pickering Drive, Burnside, Christchurch

Country: New Zealand

Postal Address: PO Box 20567, Bishopdale, Christchurch 8543

Email: darral@dementiacanterbury.org.nz

Call +64 800 444 776

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Dementia Care Foundation Bangladesh is an organisation is proud to have partnerships with the Ministry of Health and the World Health Organisation. Some of the services provided by the association include:

• Dementia Care Training
• Meaningful engagements/activities
• Memory cafés
• Seminars
• Webinars
• Workshops
• Training for carers

Organisation

Address: Room 603, National Institute of Neuro Science, Sher-E-Bangla Nagor, Dhaka

Country: Bangladesh

Email: care@dcfbd.org

Call 01712825662

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The CareGivers Association is a coalition of relatives of patients with Dementia and those who were ready to support it with a common resolution. The club's work is a nonprofit model and is intended to make the community aware of and understand Alzheimer's disease and other dementias. It was established as
the Alzheimer's Disease and Related Disorders Association (ARDA).

Organisation

Country: Thailand

Postal Address: P.O. Box 224 Panj Ratchadamnoen, Phra Nakhon, Bangkok 10200

Email: azthai.2013@gmail.com

Call +66 86 990 4207

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The Dementia Centre provides, research, consultancy and education informed by expertise in dementia to people at all levels. Their collaborations from around the globe and our results change people’s lives. Their five key focus areas include:

• Design & the environment
• Understanding behaviour
• Engagement
• Palliative care
• Models of care

As ‘international thought leaders in dementia,’ The Dementia Centre is committed to continual learning across these key areas and ensuring their work is evidence-based, current, and aligned to best practice. Currency of knowledge and advice provided by the Centre is achieved by constantly reviewing the evidence base and actively seeking the views of people with dementia. Their range of dementia services and programs:

• Provide a hub for global partnerships
• Allow for a model of constant review and renewal of initiatives in practical care settings
• Combine research, design and practical modelling
• Draw on local and international expertise
• Provide access to high-quality and tested tools
• Participate in quality research in the areas of dementia, environmental design, aged care and palliation

Organisation

Address: Level 4, 207B Pacific Highway St Leonards NSW, 2065

Country: Australia

Email: dementiacentre@hammond.com.au

Call +61 2 8437 7355

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Dementia Hawkes Bay is a Charitable Trust focusing on the development and delivery of quality services to people with a diagnosis of dementia (mate wareware) and their family/whanau in the Hawke's Bay region. They support people to function well in their own home and within the community from the point of diagnosis and throughout their dementia journey. Other services include:

• The Active Brain Programme
• Cognitive Stimulation workshops
• Industry education
• Carer support groups
• Carer and client education
• Community awareness.

Dementia Hawkes Bay works collaboratively with other members of Dementia New Zealand and we also continue to work collegially with any organisation that supports people to live well with dementia.

Organisation

Address: 102/106 Windsor Ave, Parkvale, Hastings, Marewa, Napier

Country: New Zealand

Postal Address: P O Box 4084, Marewa, Napier

Email: admin@dementiahb.org.nz

Call +64 6-834 0417

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Dementia Lakes is a local branch of Dementia New Zealand to help people living with dementia, mate ware ware, to live their best lives possible. They also provide support to their care partners  and whanau,  who play a vital role throughout the journey.

Organisation

Country: New Zealand

Email: sup2demlakes@outlook.com

Call 07 349 0053

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Dementia Mentors is a website dedicated to helping those living with dementia understand that there is still life after the diagnosis. At Dementia Mentors one of our top goals is keeping those living with dementia social, and we’re now accomplishing this from the comfort and safety of their own homes.
 

Organisation

Address: 17244 HWY US 41 Spring Hill FL 34610

Country: United States of America

Email: dementiamentors@gmail.com

Call +1.3523456270

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Dementia New Zealand is a national organisation that represents and supports six service delivery Affiliates. These are Dementia Auckland,  Dementia Canterbury, Dementia Hawkes Bay, Dementia Lakes, Dementia Wellington and Dementia Waikato. Together these organisations provide community dementia support services to areas covering 70% of New Zealand’s population Through awareness, education and support, it’s their mission to help improve the quality of life for those affected by dementia – not only individuals, but also their caregivers, whanau and support networks. By providing advocacy and access to information that promotes wellness, increases independence and provides reassurance, they want to inspire and nurture a dementia-friendly society, where anyone affected feels supported and prepared for the journey ahead.

Organisation

Country: New Zealand

Email: info@dementia.nz

Call +64 800 444 776

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Dementia Partnerships is a specialist knowledge portal, bringing together people, organisations and networks to share knowledge and learning across the Well Pathway for Dementia to improve services and promote living well with dementia. This knowledge portal provides a single point of access to curated summaries about the latest research, policy and practice developments, promoting knowledge and learning across the Well Pathway for Dementia. It is endorsed by the National Clinical Director for Dementia, NHS England.The information on the portal is organised across the Well Pathway for Dementia:

• Preventing well
• Diagnosing well
• Supported well
• Living well
• Dying well

Organisation

Country: United Kingdom

Email: editor@dementiapartnerships.com

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The North London Young Onset Dementia Support Group (YoYo) is a self-organised, self-financed group that meets in the Community Room at the Crouch End Picturehouse on the 1st and 3rd Friday in the month for Yoga, on the 2nd Friday in the month for Cognitive Stimulation Therapy and a parallel carers meeting and the 4th Friday in the month for an all members YoYo meeting.

Organisation

Address: Crouch End London N8 9BY

Country: United Kingdom

Email: rosedep@blueyonder.co.uk

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Dementia Training Australia (DTA) offer dementia courses, practical resources and training packages that are easy to access to make a difference in workplaces.

Organisation

Country: Australia

Email: dta@uow.edu.au

Call (02) 4221 5555

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We are Dementia UK is a specialist dementia nurse charity. Their nurses, known as Admiral Nurses, provide life-changing care for families affected by all forms of dementia.

Organisation

Address: Dementia UK, 7th Floor One Aldgate London EC3N 1RE

Country: United Kingdom

Email: info@dementiauk.org

Call +44 20 8036 5400

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Dementia Waikato providse information, education, support, advice, and personal advocacy for people with dementia, their whānau, and friends.

Organisation

Address: 8 Keddell Street Frankton Hamilton

Country: New Zealand

Postal Address: PO Box 5720 Hamilton 3242

Email: info@dementiawaikato.org.nz

Call 07 929 4042

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Dementia Wellington supports people with dementia and their carers, family and whanau in Kapiti, Porirua, Wellington and the Hutt Valley. The offer a range of programmes and services that encourage people with dementia to live well. Formerly Alzheimers Wellington, Dementia Wellington works to support people with dementia and their carers, family and whanau in Kapiti, Porirua, Wellington and the Hutt Valley. As a local charity, every dollar raised for Dementia Wellington stays in the wider Wellington region and goes directly towards helping local families affected by dementia to live well and remain active and engaged in th community. Dementia Wellington offer a range of services including:

• One-on-one expert advice: a team of professional Dementia Advisors provide invidualised information and advice to families affected by dementia, through one-on-one consultations and ongoing support.  Dementia Advisors are qualified to complete Total Mobility Scheme assessments and also liaise with other health providers and agencies to ensure our clients are receiving all the appropriate services and support they need to live well with their dementia.

• Living Well With Dementia Programme: this exciting initiative is about finding ways for people with dementia to keep doing the activities they’ve always enjoyed. Living Well With Dementia is a personalised socialisation programme that enables people diagnosed with dementia to remain connected and engaged in their community. A tailored plan is developed with each client to identify the activities they enjoy and any support needed to continue to do the things they have always enjoyed doing

• Education Programme: a comprehensive education programme for people with dementia, those supporting a person with dementia, health professionals, and the general public. Find out more about the courses we have available on our News And Resources page.

• Supporter Meetings: Dementia Advisors facilitate regular supporter groups for people caring for a family member with dementia. These meetings offer a forum to gain support from others in a similar situation, and share information and ideas. Find out where and when our supporter meetings are held on our News And Resources page.

• Information and advice: the Dementia Wellington team provides advocacy, advice and support to anyone with questions about dementia, including brain health and all aspects of living with dementia. You can find a list of resources and helpful information on our News And Resources page

Organisation

Address: 55 Hutt Road, Petone, Lower Hutt, 5045

Country: New Zealand

Postal Address: 5012 PO Box 39393, Wellington Mail Centre, Lower Hutt, 5045

Email: admin@dementiawellington.org.nz

Call +64 4-972 2595

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Fight Dementia and Care Organisation – Tanzania is an  organisation that supports family carers of people living with dementia and help improve rates of dementia diagnosis, care and treatment (post diagnostic dementia care), as well as raising awareness all over Tanzania. Some of the services provided by the association include:

• Caregiver meetings
• Counselling
• Day Care
• Dementia Care Training
• Educational events
• Helpline
• Resources (fact sheets, reading materials)
• Seminars, Webinars & Workshops
• Support groups
• Training for carers

Organisation

Address: Department of Communicable Diseases, Mount Meru Regional Hospital

Country: Tanzania, United Republic of

Postal Address: PO Box 157 Arusha 2555

Call +255 786 671 643

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Fingers Brain Health Institute non-profit foundation driven to advance research on healthy brain aging and the implementation of dementia prevention. Based on results from the ground-breaking FINGER (Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability) study, we take a novel approach to prevention, targeting the complex causes of dementia from a range of interdisciplinary perspectives. We incorporate multiple intervention strategies and tools in our solutions. We also drive towards implementing results at a rapid pace, while remaining dedicated to an effective, holistic, and global approach.

Organisation

Address: c/o Stockholms Sjukhem 102 26 Stockholm

Country: Sweden

Postal Address: Box 12230 Stockholm

Email: miia.kivipelto@fbhi.se

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Forward with Dementia™ is a collaborative program created by the University of New South Wales, the University of Sydney, the University of Wollongong (Australia), McGill University, University of New Brunswick, University of Waterloo (Canada), Maastricht University (Netherlands), Wroclaw Medical University (Poland), University College London, Newcastle University (United Kingdom), Alzheimer’s Disease International and Dementia Alliance International (Consortium). Copyright in this website and its content is owned by the Consortium and/or its members. All Rights Reserved.

Organisation

Country: Australia

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Frontier specialises in frontotemporal dementia (FTD) and related diseases. Our clinic is integrated with the Frontier research program, where researchers regularly offer patients access to clinical trials connected with the latest research in FTD. The clinic conducts research into Frontotemporal dementia (FTD), the second most common degenerative disease causing dementia in younger adults. 

Organisation

Address: Level 1, Building G, Brain and Mind Centre, 100 Mallet Street, Camperdown, NSW, 2050

Country: Australia

Email: frontier@sydney.edu.au

Call (02) 9114 4336

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Fundación Alzheimer Aruba (FAA) is a national organisation that aims to take action against Dehumanisation of the person with Alzheimer's & related Neurocognitive Disorders. FAA was founded by neuropsychologist Dr Melva Croes-Yanez in 2003 and has been a member of ADI since 2010. FAA is also a member of Alzheimer Iberoamerica, which is made up of 20 associations across the Caribbean, Latin America and Spain.

Organisation

Address: Sero Colorado 243 San Nicolas

Country: Aruba

Email: alzheimeraruba@gmail.com

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Fundación Alzheimer de Venezuela a is a member of Alzheimer Iberoamerica, which is made up of 20 associations across the Caribbean, Latin America and Spain. Some of the services provided by the association include:

• Caregiver meetings
• Counselling
• Dementia Care Training
• Educational events
• Helpline
• Memory Cafes
• Newsletter
• Resources (fact sheets, reading materials)
• Respite Care
• Seminars, Webinars & Workshops
• Support groups

Training for carers

Organisation

Address: F59C+RGX, Calle El Limón, Quinta Mi Muñe, El Cafetal, Municipio Baruta, Estado Miranda, Caracas

Country: Venezuela (Bolivarian Republic of)

Email: alzheimer.ven@gmail.com

Call +58 212-3152215

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The Genome Center for Alzheimer’s Disease (GCAD) is funded to identify genetic variants that cause, influence risk, or protect against this disorder, and to identify the underlying genes affected by these variants. The role of the Genome Center for Alzheimer’s Disease (GCAD) is to coordinate the integration and meta-analysis of all available Alzheimer’s disease (AD) relevant genetic data with the goal of identifying AD risk/causative/protective genetic variants and eventual therapeutic targets. To this end, GCAD will:

• Assemble and harmonize whole-genome (WGS)/whole-exome (WES) sequencing data.
• Build ADRD specific reference panels from GCAD WGS data for GWAS imputation.
• Call structural variants from sequencing data (insertions, deletions, copy number variations) following best practices.
• Support of Functional Genomics and Cognitive Systems Analysis of Alzheimer’s Disease Genetic and Phenotype data projects.
• Facilitate analysis of GCAD genetic and functional data collection.
• Identify candidate therapeutic targets by combining and reviewing analysis results by GCAD and other ADSP/non-ADSP projects.

Organisation

Country: United States of America

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Hillingdon Younger Onset Dementia Group is a chance to chat to others in a similar situation living in your area and take part in fun and relaxing activities for younger people living with dementia. Meets 10.00am-11.30am every Thursday at Northwood Library, Oaklands Gate, HA6 3AA.

Organisation

Address: Northwood Library, 12 Oaklands Gate Northwood HA6 3AA

Country: United Kingdom

Email: northwood-library@hillingdon.gov.uk

Call 01895 558262

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Huelo Alzheimer’s Tonga is Tonga's national organisation for Alzheimer's founded in 2017 and being a member of Alzheimer's Disease Ineternational since 2019.

Organisation

Address: First Floor, New City Building Corner of Mateialona and Taufa’ahau Road Nuku’alofa

Country: Tonga

Email: siutakahehau@gmail.com

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Interdem is a pan-European network of researchers collaborating in research on and dissemination of Early, Timely and Quality Psychosocial Interventions in Dementia aimed at improving the quality of life of people with dementia and their supporters, across Europe. Amongst the networks activities are the Interdem Academy which aims to promote the career development and capacity building of dementia care researchers in people with dementia, and supports the pathway to senior academic posts in the field, which is also supported by various staff members from Alzheimer Europe.

The Interdem Academy aims to enable fellowships for PhD students and postdoc researchers allowing them to spend 3-6 months in another research center and to follow courses adapted to research in dementia care. INTERDEM has various Taskforces in which committed members work together regarding a specific theme. These Taskforces are

• Assistive Technology
• Social Health
• Methodology
• Primary prevention
• Environment/ architecture
• Intercultural aspects

Organisation

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Alzheimer Iberoamerica (AIB) is a non-profit institution that is an International Federation of Alzheimer's Associations and Foundations. Composed of full members in 21 Ibero-American countries, the organisation is made up of members representing Argentina, Bolivia, Chile, Costa Rica, El Salvador, Spain, Honduras, Ecuador, Nicaragua, Guatemala, Mexico, Dominican Republic, Peru, Puerto Rico, Uruguay, Aruba, Brazil, Colombia, Cuba, Panama, and Venezuela. The organisation's objectives are to:

• Promote knowledge of Alzheimer's disease and other dementias.
• Serve as a liaison platform between its members.
• Unify criteria in public policies.
• Advise and support its members on issues of interest to them.
• Encourage the creation of national associations where they do not exist and the development of existing ones.
• Defend the interests and rights of its members at the Ibero-American level.
• Promote scientific and social research related to dementias.
• Develop strategies for searching for resources to solve the activities of the federation, without affecting the interests of the member institutions.
• Promote international cooperation among those organizations that have the same or similar objectives.

Organisation

Email: juntadirectiva.aib@hotmail.com

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iSupport is a self-help tool for carers of people with dementia, including family members, relatives and friends. iSupport is a self-help tool for carers of people with dementia, including family members, relatives and friends. iSupport can be adapted to national or local contexts and needs. Once adapted, carers can choose to work through all modules and lessons consecutively, or select the lessons that are the most relevant to their everyday lives. All lessons consist of brief readings, descriptive examples and several exercises. Carers receive feedback as they work through each exercise. The iSupport manual includes five modules and accompanying exercises including: 

• Introduction to dementia
• Being a caregiver
• Caring for me
• Providing everyday care
• Dealing with behaviour changes.

The modules and exercises reflect those included in the online version of iSupport. The iSupport manual can be printed and used offline, allowing for a broad reach of the programme particularly in regions of the world with low internet bandwidth and/or connectivity.

Organisation

Email: whodementia@who.int.

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NHS, Kensington, Chelsea and Westminster Memory Service provides assessment and diagnosis of dementia and provide ongoing support and information to people with memory problems and their carers.

Organisation

Address: 42 Westbourne Park Road Kensington London W2 5PH

Country: United Kingdom

Email: socialservices@rbkc.gov.uk

Call 020 3219 0910

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Lewisham Dementia Action Alliance runs the Lewisham Mental Health of Older Adults & Dementia Community Action Group (MHOAD CAG), a vehicle for our local community to come together to turn understanding into action and improve the area and its offer for local residents living with dementia and older adults experiences mental health problems. This group consists of different local voluntary services, community groups and individuals coming together every 6 weeks to discuss and share information relevant to older adults living in the borough of Lewisham. It was previously known as the Lewisham Dementia Action Alliance Group but in September 2021 changed its name. The CAG acts as a regular forum for consultation, providing opportunities for information sharing between statutory and voluntary service providers, service users and commissioners. Community awareness, practical action and education are also some of the tools that we use to impact lives. The focus of information sharing within the CAG is all about priorities, developments and improvements in Older Adults services in the borough. Examples include:

• Share information regarding priorities within the borough
• Provide details of important events
• Consult on a potential service change impacting older adults
• Distribute communications regarding a new strategy, legislation, or other important documents.
• Be a source of intelligence gathering around the needs of older adults within the community
• Advocate on behalf of service users from feedback we receive
• Help to make businesses and local amenities more dementia friendly

Organisation

Country: United Kingdom

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The Lewisham Dementia Support Hub offers information, advice and support to people with a dementia diagnosis and their family members / carer(s).  The dementia hub supports young onset dementia and older adults with a diagnosis to live well in the community through personalised support.  The hub delivers cognitive stimulation therapy based activities and links Lewisham residents to other groups and services in the borough.  The service also provides personalised support to carers and dementia skills workshops.  Click here for a leaflet about the service. 

Organisation

Address: Lewisham London SE13 7DW

Country: United Kingdom

Email: lewisham@dementiahub.org.uk

Call 0203 228 5960

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The Lewy Body Dementia (LBD) Research Center of Excellence (RCOE) brings together researchers from across the country joined in the first-ever comprehensive network of research centers to conduct Lewy Body Dementia clinical trials, provide community outreach, and expand professional continuing medical education. Representing 24 of medicine’s most prestigious academic medical research centers, these Research Centers of Excellence will help to streamline and standardize LBD science while connecting patients and families with the latest opportunities to participate in LBD clinical trials.

Organisation

Address: 291 Campus Drive, Stanford, CA

Country: United States of America

Call +1 650-723-4000

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The Ligue Nationale Alzheimer Liga ASBL/vzw/VoG is a national association active in the field of Alzheimer's disease and related dementias. It brings together three regional associations: 

• Alzheimer League ASBL: French-speaking information and support association for patients, relatives and professionals active in Wallonia and Brussels

• Alzheimer Liga Vlaanderen vzw: patient and volunteer organization that maintains partnerships with other self-help groups and organizations

• ALO Alzheimer Liga Ostebelgien VoG Selbsthilfe Demenz: association of help and support for people with dementia and their entourage in eastern Belgium

Organisation

Address: Rue Walthère Jamar 231/1, Ans

Country: Belgium

Email: ligue.alzheimer@alzheimer.be

Call +32 4 229 58 10

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The MindMate app is a dementia app that offers a daily activities plan to helping keep your mind and body fit. The MindMate app helps stimulate the brain with fun & interactive games. The games are designed to challenge the four core cognitive areas: problem-solving, speed, memory, and attention. The app is great for individuals who make healthy aging a priority, anyone living with memory problems like Alzheimer's or Dementia, and those with a family history of cognitive decline.  

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The National Alzheimer's Coordinating Center was established in 1999 by the National Institute on Aging/NIH to facilitate collaborative research. Using data collected from NIA-funded Alzheimer's Disease Research Centers (ADRCs) across the United States, NACC has developed and maintains a large relational database of standardized clinical and neuropathological research data. In partnership, NACC provides a valuable resource for both exploratory and explanatory Alzheimer's disease research. NACC is located in the Department of Epidemiology at the University of Washington in Seattle and funded by NIA/NIH cooperative grant U24 AG072122.

• The Alzheimer's Disease Genetics Consortium (ADGC)
• The National Centralized Repository for Alzheimer's Disease and Related Disorders (NCRAD)
• The NIA Genetics of Alzheimer's Disease Data Storage Site (NIAGADS)

The ADRC program

The National Institute on Aging/NIH currently funds 37 ADRCs across the United States. The Centers work to translate research advances into improved diagnosis and care and find ways to treat and possibly prevent Alzheimer's disease and related dementias. Each has its own research focus and recruitment protocol. However, the Centers are all required to involve their entire clinic enrollment in the Uniform Data Set (UDS) study and submit these data to NACC. The Centers are organized in cores and components: 

• Administrative
• Clinical
• Data Management & Statistics
• Neuropathology
• Outreach
• Recruitment and Education
• Biomarker
• Research Education Component

Organisation

Address: 4311 11th Ave NE, Ste 300, Seattle, WA

Country: United States of America

Email: info@naccdata.org

Call +1 206-543-8637

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The National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site (NIAGADS) is a national genetics repository to facilitate access by qualified investigators to genotypic data for the study of genetics of late-onset Alzheimer's disease.

• Request access to NIAGADS data: submit a new or renewal application to access NIAGADS datasets.
• Submit data: provide NIAGADS documents for your dataset submission.
• Documents and Guidelines: view all NIAGADS documents and guidelines.
• Databases: Genomics Database and DASHR
• Pipelines: CoRAL, Draw+SneakPeek, SWAN for SV Analysis
• Web Servers: HAMR and SAVoR

Organisation

Country: United States of America

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The New Zealand Dementia Foundation is an independent, national organisation connecting professionals to promote best practice dementia care through leadership in the areas of research, education, support, advocacy and influence. The New Zealand Dementia Foundation exists to improve the lives of people affected by dementia. We do this by supporting the dementia workforce to do their best work. Previously known as the New Zealand Dementia Cooperative, the New Zealand Dementia Foundation s a grassroots initiative, a coming together of a wide range of people who shared the same overarching goal of improving the quality of life for people with dementia and their carers/family/whanau.  

Organisation

Address: Level 5, Suite 1, 55 Anzac Avenue, Auckland Central, 1010

Country: New Zealand

Postal Address: PO Box 9522, New Market, Auckland 1149

Email: ceo@nzdementia.org

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The NIAGADS Data Sharing Service (DSS) is a repository that facilitates the deposition and sharing of genomic data from the ADSP and other NIA funded Alzheimer’s Disease and Related Dementias genomic studies with approved users in the research community. The NIAGADS Data Sharing Service (DSS) was developed in 2018 to host and share data generated from the Alzheimer’s Disease Sequencing Project (ADSP) with the research community. See below for information about data hosted in each database.

Organisation

Country: United States of America

Email: niagads@pennmedicine.upenn.edu.

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Positive Approach® enhances life and relationships of those living with brain change by fostering an inclusive global community. Positive Approach® to Care (PAC) provides a wide variety of services to enhance awareness and increase dementia care skills, including PAC Speakers, Trainers, Teepa Talks, and Certifications. Teepa’s life mission is to shed a positive light on dementia.

Organisation

Country: United States of America

Postal Address: PO Box 430, Efland, NC 27243-0430

Email: info@teepasnow.com

Call +1 877-877-1671

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The Stanford Alzheimer’s Disease Research Center (ADRC) is part of a nationwide network of congressionally mandated Centers of Excellence supported by the National Institutes of Health. The Centers of Excellence programs help establish critical research infrastructure; foster collaboration; train researchers, physician scientists, and other professional staff; and provide shared resources through core facilities.  

The clinical and research focus of the Stanford ADRC includes both Alzheimer’s disease and the spectrum of Lewy body disorders, the two most common causes of neurodegeneration. We believe that research and patient care can be advanced by comparing and contrasting distinctive features of each. We follow volunteers with Alzheimer’s disease, dementia with Lewy bodies, Parkinson’s disease, and mild cognitive impairment, and we follow healthy older adults without cognitive impairment. Our outreach activities include Latinx and Asian communities in the Bay Area. Stanford ADRC partners include:

• The National Alzheimer’s Coordinating Center
• The National Centralized Repository for Alzheimer’s Disease and Related Dementias
• The National Institute on Aging Genetics of Alzheimer’s Disease Data Storage Site
• The Resource Centers for Minority Aging Research
• The Alzheimer’s Clinical Trials Consortium
• The Alzheimer’s Disease Cooperative Study
• Stanford Medicine
• The VA Palo Alto Health Care System
• The Northern California and Northern Nevada chapter of the Alzheimer’s Association
• The Pacific Udall Center
• The Stanford Neurosciences Institute
• The Stanford Lewy Body Dementia Research Center of Excellence

Organisation

Address: Stanford Alzheimer’s Disease Research Center 213 Quarry Road Palo Alto, CA 94305

Country: United States of America

Email: adrcstanford@stanford.edu

Call +1 650-721-2409

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Stichting Alzheimer en Overige Dementieën Suriname is a national association proividing hands-on training courses for caregivers, as well as its close working relationship with the Ministry of Health and PAHO and its annual dementia awareness walk, titled “Holding a torch for those who live in the shadows”. Some of the services provided by the association include:

• Counselling
• Dementia Care Training
• Educational events
• Helpline
• Memory cafés
• Resources (fact sheets, reading materials)
• Seminars, Webinars & Workshops
• Support groups
• Training for carers

Organisation

Address: Monizstraat 32, Benie's Park Paramaribo 0597

Country: Suriname

Email: stg.alzheimer.suriname@gmail.com

Call +597 850-4466

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TADA is a national organisation proud of amending their bylaws to include the human rights of people with dementia. They have created an advisory group and paid attention to various issues including financial security, traffic rights, labour rights, etc. They have also developed many ‘Schools of Wisdom’ (cognitive intervention module designed for people with mild dementia), as well as 500 Support Centres for People with Dementia and their Families (SPDF) across the country. They strive to promote dementia-friendly organisations and communities, including stores, medical units, churches, banks, MRT, buses, police, workplaces, etc. Some of the services provided by the association include:

• Caregiver meetings
• Counselling
• Dementia Care Training
• Educational events
• Helpline
• Meaningful engagements & activities
• Memory Cafes
• Newsletter
• Resources (fact sheets, reading materials)
• Seminars, Webinars & Workshops
• Support groups
• Training for carers

Organisation

Address: 3F.-2, No.29, Sec. 3, Zhongshan N. Rd. Taipei City 104

Country: Taiwan, Province of China

Email: tada.tada@msa.hinet.net

Call +886 2 2598 8580

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The ALS Association is the only national nonprofit organization fighting ALS on every front.  By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

As the preeminent ALS organization, The Association leads the way in research, care services, public education, and public policy — giving help and hope to those facing the disease.  The Association’s nationwide network of chapters provides comprehensive patient services and support to the ALS community. The mission of The ALS Association is to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest

Organisation

Country: United States of America

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The Arizona Alzheimer’s Consortium (AAC) is the nation’s leading model of statewide collaboration in Alzheimer’s disease research. Established in 1998, the Consortium capitalizes on its participating institutions’ complementary strengths in brain imaging computer science, genomics, the basic and cognitive neurosciences and clinical and neuropathology research to promote the scientific understanding and early detection of Alzheimer’s disease and find effective disease-stopping and prevention therapies. It also seeks to educate Arizona residents about Alzheimer’s disease, research progress in the state and the resources needed to help patients, families and professionals manage the disease.

The Consortium is determined to find effective treatments to halt the progression and prevent the onset of Alzheimer’s disease without losing a generation. The Arizona Alzheimer’s Consortium is an organization that includes the state-supported Arizona Alzheimer’s Research Center (AARC), the National Institute on Aging (NIA)-funded Arizona Disease Core Center (Arizona ADCC), and independently funded research programs. Its seven member institutions include:

• Arizona State University
• Barrow Neurological Institute
• Mayo Clinic Arizona
• Banner Sun Health Research Institute
• Translational Genomics Research Institute (TGen)
• University of Arizona
• Banner Alzheimer’s Institute.

Organisation

Address: 4745 N. 7th St., Ste. 105 Phoenix, AZ 85014-3666

Country: United States of America

Email: David.Jerman@bannerhealth.com

Call +1 602-374-8033

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The Bahamas Alzheimer's Association pprovide support for Alzheimer's patients and caregivers in the Bahamas, advocating for and providing awareness of Alzheimers in the Bahamas. The Beahamas Alzheimer's Association aims to:

• Provide to the Bahamian public support, guidance, assistance, advocacy and education about Alzheimer’s and Dementia, the stages of the diseases and the challenges presented to patients and their care givers, and to be a dynamic and collaborative charitable organization with the aim of fostering alliances and encouraging collaborations across various disciplines.
• Remove the negative stigma associated with Alzheimer’s and Dementia.
• Provide support and care for the care-givers of those suffering with Alzheimer’s and Dementia.
• Promote awareness and assist to educate persons in the Commonwealth of the Bahamas about Alzheimer’s and Dementia.
• Work with medical professionals and educators to train care-givers to improve the quality of care provided for those living with Alzheimer’s and Dementia.
• Conduct research to gather statistics and establish records on Alzheimer’s and Dementia in the Commonwealth of the Bahamas
• Work with families, institutions and homes providing care for those living with the Alzheimer’s and Dementia to assure that the most current information, developments and care is known and made available

Organisation

Address: Nassau

Country: Bahamas

Email: info@bahamasalzheimersassociation.org

Call 242-828-6774

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The Hazel Hawke Alzheimer’s Research and Care Fund is a fund to support dementia care research across Australia.

Organisation

Address: Endeavour House, Level 3, 2-10 Captain Cook Crescent Griffith ACT 2603

Country: Australia

Postal Address: PO Box 3021 Manuka ACT 2603

Email: foundation@dementia.org.au

Call (02) 4962 7010

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The McKnight Brain Research Foundation is a private foundation devoted exclusively to solving the mysteries of the aging brain and helping people achieve a lifetime of cognitive health.

Organisation

Country: United States of America

Postal Address: P.O. Box 620005 Orlando, FL 32862

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The National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD) provides biological samples. NCRAD’s catalogs of biospecimens include a limited data set from the NACC Uniform Data Set (UDS). In addition, the catalogs provide links to NIAGADS datasets for subjects with available genetic data.NCRAD is the NIA-designated biorepository for biospecimens from dementia-related studies. It banks a broad range of samples that can be requested by qualified investigators. These include:

• DNA
• RNA
• Plasma
• Serum
• CSF
• Brain tissue
• Lymphoblastoid cell lines (LCLs)
• Peripheral blood mononuclear cells (PBMCs)
• Induced pluripotent stem cells (iPSCs)
• Fibroblasts
• Feces.

Organisation

Country: United States of America

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The NIA Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS) provides genetic data to any qualified researcher. NIAGADS is the National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site. Supported by a U24 cooperative agreement between NIA and the University of Pennsylvania, NIAGADS is a national genetics repository to facilitate access by qualified investigators to genotypic data for the study of genetics of late-onset Alzheimer's disease. The goal of the ADGC is to identify genetic variants associated with risk for AD. It has long been known that genetic factors play an important role in the development of Alzheimer's Disease. 

1. Explore: the Genomic Database provides a genome browser that allows comparison of AD GWAS summary statistics tracks to sequence variation and transcriptional regulation. Search for your favorite gene or variant to explore its genomic context and then switch to a full browser view to add additional tracks.
2. Analyze: Search strategies make it easy to ask sophisticated questions about your data. Find variants associated with alzheimer's disease datasets or explore all available searches. Upload a gene list and take advantage of our functional and pathway enrichment tool to gain new insight into an existing dataset. Browse our example search strategies for some ideas.
3. Share: Download your result for further analysis. Registered users can share strategy and analysis results with the community or generate a static link for a publication. Bookmark your favorite genes and variants and save and annotate strategies to create a personalized workspace.

NIAGADS ensures that genotypic data for the study of Alzheimer’s disease and related dementias (ADRD) is harmonized and shared with the research community at large. The centers and projects listed here work together on data deposition from start to finish – through sequencing, processing, storing, and sharing. These collaborations allow for capacity building and enhanced discovery in the field of ADRD genetics.

Organisation

Country: United States of America

Email: NIAGADS@pennmedicine.upenn.edu

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The Uruguayan Association of Alzheimer's and similar is a non-profit institution that provide ssupport to people affected by Alzheimer's and other dementias to improve their quality of life and that of their family environment and communicate to society in general the knowledge and advances in the problem of Alzheimer's and other dementias. The organisation aims be a national reference in Alzheimer's disease and other dementias, both in the awareness, training and execution of activities aimed at affected people and their families, caregivers and society in general.

Organisation

Address: Magallanes 1320 PB, esq. José E. Rodó

Country: Uruguay

Email: audasur@gmail.com

Call +598 2400 8797

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The Vietnam Alzheimer Disease & Neurocognitive Disorders Association (VnADA) is an association based in Hanoi and Ho Chi Minh, Vietnam proud to have developed the Guideline of Diagnosis and Treatment on Dementia in 2018, as well as a Dementia Unit network. Some of the services provided by the association include:

• Caregiver meetings
• Day Care
• Educational events
• Meaningful engagements and activities
• Resources (e.g. fact sheets, reading materials)
• Seminars, Webinars & Workshops
• Training for carers

Members include persons who work in medical work and medical research, related to Alzheimer's disease and cognitive neurological disorders, are working or retired, living together within the framework of Vietnamese law allows.

Organisation

Address: Office of The Department of Neurosurgery, 9B3th Floor Cho Ray Hospital Ho Chi Minh City HCM

Country: Viet Nam

Postal Address: 201B Nguyen Chi Thanh, Ward 12, HO CHI MINH CITY HCM

Email: vada.ncd@gmail.com

Call +84-28-3955-230

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The Alzheimer’s Disease Cooperative Study (ADCS) was formed in 1991 as a cooperative agreement between the National Institute on Aging (NIA) and the University of California, San Diego. The ADCS is a major initiative for Alzheimer’s disease (AD) clinical studies in the Federal Government, addressing treatments for both cognitive and behavioral symptoms. The ADCS is part of the NIA Division of Neuroscience’s effort to facilitate the discovery, development and testing of new drugs for the treatment of AD and is part of the Alzheimer’s Disease Prevention Initiative as well.

Organisation

Address: 9452 Medical Center Drive 4th Floor La Jolla, CA 92037

Country: United States of America

Email: djbennett@health.ucsd.edu

Call +1 858-822-6837

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The Dementia Australia Dementia Research Foundation – Victoria was established in 2012 to distribute funds generously donated for the purpose of research. The funds are used to provide research grants to Australian based dementia researchers, with priority given to projects with potential benefits for the 97,000 Victorians living with dementia and their families and carers with the expectation to grow to 386,000 by 2050. The Foundation’s priority is to fund research that is likely to directly benefit people with dementia, their families and carers. Grants have therefore generally been awarded to projects investigating psychosocial and clinical aspects of dementia, rather than to projects based in the lab. In consultation with the Dementia Australia Vic Consumer Advisory Committee and others, the Foundation’s Board have set five priority research areas for our grants program.

• The less common forms of dementia (including Frontotemporal dementia and Lewy body disease)
• Assistive technologies to improve the quality of life of people with dementia and their families
• Supporting families and carers
• Improving care of hospitalised patients with dementia
• Translational research (moving evidence into practice)

Organisation

Country: Australia

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The Dementia Australia Research Foundation (previously known as the Alzheimer's Australia Dementia Research Foundation) is the research arm of Dementia Australia. They fund researchers across all stages of their career but maintain a particular focus on supporting Australia’s talented new and early career dementia researchers. They believe science holds the key to ending dementia, so our annual Dementia Grants Program provides funding to support innovative Australian research to:

• Better understand the causes of dementia
• Develop strategies to reduce dementia risk and slow the progression of the disease
• Provide accurate and timely diagnoses
• Improve treatment and care options for people living with dementia
• Find a cure

All funding for the Dementia Australia Research Foundation is donated by members of the public and by private and philanthropic organisations. Currently 85% of all funding received goes directly to the Dementia Grants Program, with the remainder used for the communication of research and for managing the grants program. The Dementia Australia Research Foundation administers the Hazel Hawke Alzheimer’s Research and Care Fund, which supports research into the best care practices for people with dementia. The highly competitive Dementia Grants Program provides at least $1 million in funding for project grants, travel grants, postdoctoral fellowships and postgraduate scholarships each year. Please explore our site to find out who our researchers are and some of our success stories.

Organisation

Address: Endeavour House, Level 3, 2-10 Captain Cook Crescent Griffith ACT 2603

Country: Australia

Postal Address: PO Box 3021 Manuka ACT 2603

Email: foundation@dementia.org.au

Call (02) 4962 7010

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The Alzheimer's Association of Turkey is a non-governmental organization established in 1997 by patient relatives and physicians specialized in Alzheimer's disease and serves with 15 branches throughout Turkey. The highest priority in the activities of the association is given to raising awareness and educating our people about Alzheimer's disease and care and increasing the quality of life of people and families suffering from this disease. With the support of physicians and volunteers specialized in Alzheimer's Disease, it provides all kinds of social support and training to Alzheimer's patients and their relatives;

• It trains doctors, nurses and health personnel so that Alzheimer's patients can be cared for correctly and with quality care during the disease process;
• It organizes psychological support and solidarity meetings for the relatives of Alzheimer's patients under the direction of expert psychologists;
• It opens special branch centers related to Alzheimer's disease and provides infrastructure, medical tools and equipment, devices, rehabilitation equipment and personnel for these centers;
• It provides quality consultancy to the nursing homes/nursing homes to be opened.

Organisation

Address: Halil Rıfat Paşa Mah. Güler Sk. No:33 Okmeydanı Şişli Istanbul

Country: Turkey

Postal Address: No:33 Okmeydanı Şişli Istanbul

Email: fkocaman@alzheimerdernegi.org.tr

Call +90 212 224 41 89

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The UAB Alzheimer's Disease Center is a research centre to overcome Alzheimer's disease and related disorders by conducting, fostering, and enabling research at UAB and through national collaborations, by providing the highest level of care to patients and families, and by educating both professionals and the public about aging, dementia, and brain health. The research is aimed at reducing Deep South disparities in Alzheimer’s disease

Organisation

Address: Sparks Center, SC 640, 1720 Seventh Avenue South Birmingham, AL 35294

Country: United States of America

Email: alz@uabmc.edu

Call +1 205-934-6307

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The Uganda Alzheimer Association (UAA) was founded by Prof. Semakula Kiwanuka, Prof. Seggane Musisi, Dr. Paul Kiwanuka-Mukiibi, Dr. Asumani Kinobe, Mrs. Judith Kinobe, Prof. Noeline Nakasujja and Ms. Esther Mukasa in 2015 and joined ADI as a member in 2021. The association is based in Kampala, Uganda. Some of the services provided by the association include:

• Caregiver meetings
• Counselling
• Seminars, Webinars & Workshops

Organisation

Address: Design Hub, 3 Bata Close 5th Street Industrial Area 7381 Kampala

Country: Uganda

Postal Address: P.O. Box 7381 Kampala

Email: general.secretary@ugandalzheimer.org

Call +256 783 555720

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The Wicking Dementia Research and Education Centre is at the forefront of translational research and support for issues confronting people with dementia and their carers. Projects are being carried out in Tasmania and nationally, across research fields such as neuroscience, medicine, nursing, psychology and sociology, health, economics and policy.  The Wicking Dementia Research and Education Centre (WDREC) is unique in Australia as an integrated dementia centre that is active across a range of disciplines, seeking to improve the lives of people with dementia and their carers. The WDREC aims to:

• Better understand the diseases affecting the brain that cause progressive decline in functioning affecting memory, problems solving skills, function and social behaviour
• Develop evidence-based models of care provision for people with dementia and their carers
• Explore the trajectory of brain and functional changes in ageing through dementia
• Provide educational programs to build knowledge and understanding of dementia within the community

Organisation

Country: Australia

Postal Address: Private Bag 143, Hobart TAS 7001

Email: wicking.enquiries@utas.edu.au

Call +61 3 6226 6914

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The Wisconsin Alzheimer’s Disease Research Center supports researchers in their pursuit of answers that will lead to improved diagnosis and care for patients while, at the same time, focusing on the program’s long-term goal — finding a way to prevent and effectively treat Alzheimer’s disease.

Organisation

Address: 600 Highland Avenue MC 2420 Madison, Wisconsin 53792-2420

Country: United States of America

Email: adrc@medicine.wisc.edu

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The World Dementia Council (WDC) is an international charity stimulating innovation and pursuing opportunities for global collaboration against dementia.. It consists of senior experts and leaders drawn from research, academia, industry, governments and NGOs in both high-income and low- and middle-income countries, including two leaders with a personal dementia diagnosis. 

Organisation

Country: United Kingdom

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The World Young Leaders in Dementia (WYLD) is a network of passionate, young professionals working across disciplines and borders to develop innovative dementia solutions. The World Young Leaders in Dementia (WYLD)’s mission is to train, connect and facilitate careers of young professionals in the field of dementia globally. We provide a platform to empower young leaders to create a better world for those living with dementia, their families and their communities. They aim to create a better world for those living with dementia, their families and their communities by:

• Bringing creative brainstorming, fresh perspectives, and novel solutions to the dementia field.
• Contributing to new dementia strategies that incorporate the latest innovations in technology and research to meet the needs of a rapidly changing world.
• Providing a platform for idea exchange and shared projects to enable a culture of collaboration among the next generation of leaders in dementia.

The World Young Leaders in Dementia (WYLD) are millennials from clinical, academic, care, advocacy and commercial backgrounds who have united to improve the lives of people with dementia across the globe. They do this by

• Supporting the work of the World Dementia Council as an associate member, contributing one young leader to each of their five Global Teams. Find out more here.
• Convening regular workshops alongside international dementia conferences to brainstorm dementia solutions across the spectrum of research, care and advocacy. 
• Working in partnership with existing dementia organisations to contribute novel perspectives and broaden the global reach of their projects.
• Delivering commissioned projects that draw on our unique network of global connections and communication channels.
• Developing a membership directory of emerging young leaders in dementia across the world to facilitate new collaborations, both within and outside of the network.

Organisation

Address: 41, rue Henri Entringer L-1467 Howald, Luxembourg R.C.S.F13167

Country: Luxembourg

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World-Wide FINGERS is a global interdisciplinary network with a mission to share knowledge and experiences on trials for dementia prevention and risk reduction, harmonize data, and plan joint international initiatives for the prevention of cognitive impairment and dementia. World-Wide FINGERS is a unique network that brings together research teams from over 40 countries around the world. The network promotes international joint initiatives and a novel approach to clinical trials in an effort to identify strategies for prevention and risk reduction of cognitive impairment, dementia, and Alzheimer’s disease. Alongside being implementable and effective in a global setting, these strategies are also tailored to different geographical, cultural, and economic settings.

Through synergistic use of data from multiple countries, World-Wide FINGERS creates a unique opportunity for rapid knowledge dissemination and implementation world-wide. The clinical trials that are currently being conducted as part of World-Wide FINGERS include common methodological features, following the core principles of the original FINGER study: 

• A focus on multidomain interventions (such as diet, exercise, cognitive training, control of vascular or metabolic risk factors, and/or social stimulation)
• Delivery of the intervention through group and individual sessions
• Tailoring of the intervention to individual needs
• Randomisation of participants so that the results of the intervention can be compared with a control group
• Prospective harmonisation of outcomes to allow for data pooling and large-scale multi-trial analysis  

Each trial is tailored to the needs of the participants in the specific country, according to local habits, resources, and other cultural factors. Our aim is to harmonize both outcomes and interventions, and to eventually have a biorepository to also harmonize the collection of, for example, fluid biomarkers.The clinical trials within the World-Wide FINGER network are currently at different stages of implementation and alignment to the original FINGER study. Each trial falls within a specific level based on its current status.

Organisation

Email: miia.kivipelto@ki.se

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The Yemen Foundation against Alzheimer's Dementia (YFAD) is an association based in Sana’a, Yemen. Some of the services provided by the association include:

• Counselling
• Meaningful engagements and activities
• Resources (e.g. fact sheets, reading materials)
• Seminars, Webinars & Workshops
• Support groups

Organisation

Country: Yemen

Postal Address: Po Cox 7226 NGI District Hadda

Email: amely.saif@gmail.com

Call +967 777009090

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The Young Dementia Network is a collaboration between people affected by and working in the field of young onset dementia. Everyone is united in one purpose to improve the lives of people with young onset dementia and their families now and to create positive change for the future. The Young Dementia Network:

• Provides opportunities for its members to collaborate, share experience and knowledge and learn from each other
• Campaigns for change both in the areas of policy and practice
• Creates resources for younger people and their families, for people working in health and social care and for service developers and commissioners
• Is involved in and supports young onset dementia research
• Is passionate about informing and connecting people, enabling them to learn from each other
• Works collaboratively with individuals and organisations in order to bring about real change

The Network has a growing membership of people living with young onset dementia, their family and friends, health and social care professionals, service providers, researchers, charities, and volunteers working in the field of young onset dementia. It has created a range of useful resources for people affected by young onset dementia as well as for professionals such as GPs and clinicians, service providers and commissioners. The Network runs monthly young onset dementia webinars, with a tea-theme, that bring together members, people living with young onset dementia, family members, professionals working in the field, and people interested in young onset dementia to create an opportunity to connect, support, and inform each other.

Organisation

Address: 7th Floor One Aldgate London EC3N 1RE

Country: United Kingdom

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The Young Onset Dementia Support Groups and Services Database allows you to search for young onset dementia groups and services in the United Kingdom

Organisation

Country: United Kingdom

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The Younger Onset Dementia Aotearoa Trust (YODAT) was formed by people interested in improving the lives of younger people living with dementia and their families and support person. The overarching goal of YODAT is to enable people with younger onset dementia to live in their homes and communities for as long as possible before some form of residential care may become necessary; and if that time does come, that age appropriate and home-like facilities are available to encourage strategies based on individual strengths and interests to enhance quality of life. YODAT is seeking to address the gaps in the care and treatment of people living with younger onset dementia by providing age appropriate facilities and services addressing physical, emotional and spiritual needs, advocacy for people with this condition, and support for their families, carers and communities.

Organisation

Country: New Zealand

Email: yodatdayservice@gmail.com

Call 0204 157 9005

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Zimbabwe Alzheimer’s and Related Disorders Association (ZARDA) has grown from a small support group for carers to an organisation of over 250 people that offers support, training, therapy classes and awareness, a real ‘information hub’. Some of the services provided by the association include:

• Caregiver meetings
• Counselling
• Dementia Care Training
• Educational events
• Helpline
• Meaningful engagements/activities
• Newsletter
• Resources (fact sheets, reading materials)
• Seminars/Webinars/Workshops
• Support groups
• Training for carers

Organisation

Address: 12 Adare Road, Rolf Valley, Harare

Country: Zimbabwe

Email: https://zarda.org/

Call +263 779 714 905

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