Short Movie on Huntington's Disease
Living with a rare disease is a challenge, not only for the patients themselves, but also for their loved ones who often are also their carers. Our short movie tells the story of two friends - one with cervical dystonia, the other with a twin brother having Huntington's Disease - who meet over the years and talk about their lifes. Thereby they get to talk about the different stages of the diseases and the challenges they have to face in everyday life. The story is based on patient experience.
Patient Journey HD - a real experience story
"Many people think about Huntington's Disease (HD) as a movement disorder - but it's not" - did you know, that even doctors are not familiar with all specifics on HD? Our patient journey visualizes the different stages of the disease as short and simple overview. For patients, for clinicians, for carers. And it is available in 15 languages.
The Chorea & Huntington's Disease Disease Knowledge Page provides reference information about care of Chorea & Huntington's Disease.
Information and knowledge that has been developed or endorsed by ERN-RND is found in blue boxes.
Definition
ERN-RND centres for Chorea & Huntington's Disease
Educational webinars
Webinars in regards to Choreas:
- Diagnostic approach to childhood-onset Chorea by Juan Darío Ortigoza-Escobar
- Autoimmune Chorea by Jeroen Kerstens
- New Insights into Molecular Pathogenesis and Therapeutic Opportunities by Sarah Tabrizi
- Neuroacanthocytosis syndromes, a rare Chorea by Adrian Danek
- Immune-Mediated Choreas by Jan Lewerenz
- Benign Hereditary Choreas by Kathryn Peall
- Mitochondrial disorder with Chorea by Martin Paucar Arce
- Diagnostic algorithm for Childhood Onset Chorea by Juan Darío Ortigoza-Escobar
- Approach to the patient with non-HD Chorea by Ruth Walker
Webinars in regards to Chorea Huntington's Disease:
- Family experiences with HD by Siri Kjølaas
- Clinical practice recommendations for physical therapy for Huntington’s Disease by Bernhard Landwehrmeyer
- A challenge in neurogenetics: Huntington's Disease in kids by Ferdinando Squitieri
- Huntington's Disease & COVID-19 by EHA & ERN-RND
Webinars addressing all subthematic areas:
- Genetic therapies and therapy developments for rare movement disorders by Willeke van Roon-Mom
Patient Registries to which ERN-RND members contribute
Clinical studies & trials
Patient information – Adult & Paediatric
Please note that this section includes useful information from a variety of sources provided by ERN-RND members but which hasn’t been endorsed by ERN-RND.