In this section, we have compiled reliable information to give you an overview of Huntington’s disease. You will find interesting, clear, and didactic links to articles, FAQ sheets, videos and audio files about the history, basics, and symptoms of HD.
We believe that the better you understand HD, the better prepared you will be to deal with this diagnosis.
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, symptoms and disease progression, diagnosis and treatment, HD inheritance and causes, and HD in daily life.
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 encyclopaedia for patients and an encyclopaedia for professionals, 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.
European Reference Network for Rare Neurological Diseases – ERN-RND
The European Reference Network (ERN) is a virtual network comprised of healthcare professionals spread around Europe. The European Reference Network for Rare Neurological Diseases (ERN- RND) aims to address the unmet needs of more than 500,000 people living with RNDs in Europe. Through coordination and knowledge transfer, ERN-RND shall establish a patient-centred network to address the needs of patients with RND of all age groups, with or without a definite diagnosis, by implementing an infrastructure for diagnosis, evidence-based management, treatment and collection of patient data.
Here you will find reference information about educational webinars, care standards guidelines, clinical studies and trials, patient organizations, etc.
Huntington’s Disease Youth Organization
The Huntington’s Disease Youth Organization is a non-profit organization set up to provide support and education to young people (aged up to 35) impacted by Huntington’s disease around the world.
Here you will find information about what is HD and how does it affect people, its history and the genetic features of HD.
Huntington's Outreach Project for Education at Stanford
This 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 information about the science of HD, diet and lifestyle in HD patients, podcast and other resources
Huntington’s Disease Association (HDA)
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 information about the science of HD, research and resources for professionals, how you can get help or get involved, etc.
Huntington Study Group (HSG)
HSG is the world’s first HD cooperative therapeutic research organization. Today, HSG is a world leader in facilitating high quality clinical research trials and studies that bring us closer to finding more effective treatments for HD and reducing the burden of HD for families affected by the disease.
Here you will find information about clinical trials and research, educational videos and learning about living with HD, quiz and other resources.
Huntington’s Disease Society of America (HDSA)
HDSA is the premier nonprofit organization based 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 information about the science of HD, research and healthcare professional resources, advocacy and how you can get involved, etc.
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, clinical trials and research, awareness and how you can get involved, news and multimedia, etc.
Scottish Huntington’s Association (SHA)
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 involved, etc.
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, clinical trials and research, events and news about HD, multimedia and other resources.
Huntington’s Western Australia
Huntington’s WA was formed specifically to improve the quality of life for people with Huntington’s Disease, their families and carers in Western Australia. The Association is dedicated to providing individual advocacy, support and education for the Huntington’s community.
Here you will find information about research, Parenting Resources Pack, FAQ, event and news, advocacy and how you can get involved, etc.
