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 publications with comprehensive information about caring, factsheets and guides, digital resources for carers, a list of employers for carers, and many other topics.
European Huntington’s Disease Network
The EHDN is a non-profit research network of scientists, clinicians, patients and families committed to advancing research, facilitating the conduct of clinical trials, and improving clinical care in HD.
Here you will find information about HD history, support resources for professionals and the HD community, multimedia and articles, 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 a lot of excellent guidance available for professionals working with people with Huntington’s disease and their families – many useful best practice guides in the downloads on this page
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 multemida to support the families and the HD Community.
Fondazione LIRH
LIRH is a Foundation based in Italy which strives to ensure that patients with Huntington’s Disease, people at risk and their families have access to appropriate and innovative therapies, receive adequate clinical and psychological care and live their conditions without being subject to prejudice or discrimination.
Here you will find information about the history of HD, professional support, awareness and how you can get involve, news and multimedia, 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 raitning course (videos/workshops) to offer expert knowledge about Huntington’s disease to primary care providers and family practitioners who care for people with HD at the local level