In this section, we have compiled different sorts of information (articles, videos, podcast, online forum) to help HD families adjust to this diagnosis and get to know the HD global community. You will find valuable resources that provide psychological support, as well as practical tips to better cope with HD challenges. We believe that the more tools you have to help you face HD, the better quality of life and well-being you will achieve.
Because we understand the importance of building the capacities of health care providers to understand HD and address HD complexity, we added to this section useful contents to support professionals in their daily practice.
Link added on: 02/04/2022
Carers UK - Making Life Better for Carers
Carers UK is a national membership charity for carers that provides expert advice, information and support to formal and informal carers from local communities throughout the UK and online for the past 50 years
Here you will find a vast amount of useful information for people who care for an HD patient, including factsheets and guides with advice on financial issues, technology and equipment, work and career, tips to look after yourself and those you care for, relationships, and many other topics.
Link added on: 04/04/2022
Huntington’s Disease Youth Organization
The Huntington’s Disease Youth Organization is non-profit set up to provide support and education to young people (aged up to 35) impacted by Huntington’s disease (HD) around the world. Many different topics relevant to young members from HD families, going from “Being at Risk”, “Emotional Wellbeing”, “Coping” or “Genetic Testing Checklist”
Here you will find information about what is HD and how does it affect people, articles and multimedia to support the families and the HD Community.
Orphanet - The portal for rare diseases and orphan drugs
Orphanet is a unique resource, gathering and improving knowledge on rare diseases. It aims to provide high-quality information on rare diseases, increase the visibility of rare diseases and ensure equal access to knowledge for all stakeholders. Orphanet was established in France by the French National Institute for Health and Medical Research in 1997. This initiative became a European endeavour from 2000, supported by grants from the European Commission: Orphanet has gradually grown to a Consortium of 40 countries, within Europe and across the globe.
Here you will find multilingual relevant information about the classification of HD and other rare diseases, an inventory of orphan drugs, a directory of patient organizations, a directory of professionals and institutions related to HD, a directory of expert centres, a directory of medical laboratories providing diagnostic tests, a directory of ongoing research projects, clinical trials, registries and biobanks, and a collection of reports and news about HD and other rare diseases.
RARE/D
Rare/D is a project created by the Whitworth group (a group of experts in Psychology, Genetic Counselling, Patient and Public Involvement, Narrative practices, Rare disease, among other disciplines). This group has a shared interest in the definition of ‘rare’ and what that means to us all, which has led to the developing of “RARE/D” – a project connected to the University of Manchester. RARE/D aims to trigger conversations and debates across society about the implications of developments in rare conditions and genomic medicine. The ultimate goal of RARE/D is to address and reduce the stigma and isolation encountered by those with a rare condition.
Here you will find articles and podcasts that strive to make accessible to all the lived experience of and latest research about rare conditions; stimulate new conversations about what it means to have a rare condition; ensure research into rare conditions is informed by these experiences and conversations.
EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 988 rare disease patient organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.
Here you will find more information about international activities of EURORDIS, publications on rare diseases, information about the orphan drugs and access to them, and the experiences from patients and families with rare diseases.
European Huntington Association – (EHA)
The European Huntington Association (EHA) was created in 1986 and its initial goals were research and scientific aspects of Huntington’s disease. Since 2004, the focus of EHA has been to provide support to patients and families affected by Huntington’s disease. In 2016, the EHA launched the “Stronger Together” project, which aimed to build a bridge between HD families and the research community. The EHA is the promotor of the “Moving Forward” project. Additionally, the EHA supports the foundation of new local Huntington’s disease associations across Europe.
Here you will find information about HD, care guidelines, interesting workshops and webinars, the contact details of existing Huntington’s disease associations in Europe and news about HD-related events.
Link added on: 04/04/2022
International Huntington Association (IHA)
The International Huntington´s Association (IHA) is a non-profit umbrella organization, made up of local associations all over the world. Established in 1974 by Marjorie Guthrie, it now represents more than 250,000 individuals and member associations in South and North America, Europe, China, Australia, India, Middle East and Africa.
Here you will find information about HD basics, treatment options for HD, find your national HD organisation, news about HD events.
Link added on: 19/12/2022
La Ligue Huntington Francophone Belge
The Belgian French-speaking Huntington League is a self-help and support group for families facing Huntington’s disease in the French-speaking part of Belgium. The League is composed of a Social Service, a Board of Directors, a Scientific Council and Full Members.
It is an active organization on Huntington’s disease in French.
Link added on: 19/12/2022
The Huntington Liga
The Huntington Liga is an association that supports families affected by Huntington’s disease in Belgium. They work together with all genetic centres in Flanders. All persons affected by Huntington’s disease, their families, friends and care providers can turn to the Liga, and they have a wide range of services and activities for its members.
It is an active organization on Huntington’s disease in Belgium.
DingDingDong
Dingdingdong is a French organization created in order to provoke such a resumption of certain ways of thinking and doing that concern this so-called orphan disease as much more widespread diseases such as Alzheimer’s and Parkinson’s. Their goal is to collectively come to grips with an experience whose users are the scouts and which potentially concerns us all: living with a genetically announced disease.
Here you will find articles and personal stories about living with HD.
Huntington’s Disease News (HDN)
Huntington’s Disease News is a site strictly for news and information website about the disease. It does not provide medical advice, diagnosis or treatment.
Here you will find global news about living with HD, articles and multimedia to support the HD community and patients, etc.
HOPES - Huntington's Outreach Project for Education at Stanford
HOPES is a student-run project at Stanford University, California, dedicated to making scientific information about Huntington’s disease (HD) more readily accessible to patients and the public.
Here you will find support information about the diet and lifestyle in HD patients, conferences and podcasts, etc.
Huntington’s Disease Society of America
HDSA is the premier nonprofit organization in North America dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families.
Here you will find support information and professional resources, advocacy and how you can get involve, etc.
Huntington’s Disease Association
HDA is a charity that supports people in England and Wales affected by Huntington’s disease. They work to improve care and support services for people with Huntington’s disease, educate families and professionals, and champion people’s rights.
Here you will find important guidelines and articles related to physiotherapy, nutrition, speech therapy, occupational therapy and oral healthcare in HD, among others
Huntington Society of Canada
This Canadian not-for-profit charitable organization works to improve the quality of life for those affected by Huntington disease. HSC is trying to facilitate excellent support services, providing access to the best and most up-to-date educational resources, increasing national and global awareness, advocacy and investing in promising research.
Here you will find information about what is HD, support resources for HD families, articles and multimedia, etc.
Scottish Huntington’s Association
SHA is the only charity in Scotland dedicated exclusively to improving the lives of people who are impacted by Huntington’s disease. The charity’s family-centred approach and focus on delivering change for local communities is recognised and replicated at national and international levels as a model of excellence in the care and support of the HD community.
Here you will find information about the history of HD and fact sheets, events and how you can get involve, youth service and peer support groups, etc.