Huntington’s Disease and other Choreas
The Huntington’s Disease & other Choreas Disease Knowledge Page provides reference information about care of Choreas & Huntington’s Disease.
Patient Journey movies
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ERN RND: Patient Journey Movie Huntington’s Disease
“That’s the thing with this disease: It doesn’t just affect the person who has the gene, but entire families.” What Martha is referring here to, is the fact, that Huntington’s Disease (HD) has a 50% chance of inheritance. So if a parent has it, there is a high chance that a child could have it to.
Our patient journey movie “Huntington’s Family” portrays the life of a family that is affected by this disease: There is Martha, who is carer to her husband Tom and their daughter Rachel, who also has HD. And there is Rachel’s daughter Chloe, who went to genetic counselling and is in the process of being tested. While Rachel’s brother doesn’t want to be tested, but whose wife is expecting a child that could have the gene, too. “It’s a slow train wreck”, Martha says.
The movie shows the different family members’ coping strategies over the years, thereby capturing both their struggles and their moments of light.
ERN-RND Short Movie – Huntington’s Disease and Cervical Dystonia
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 scientific 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
Disease Knowledge Documents
Information and knowledge that has been developed or endorsed by ERN-RND can be found in blue boxes.
Defintion
ERN-RND Centres for Huntington’s Disease and other Choreas
Centres for Chorea & Huntington’s Disease and their contact details
Care Standards
Available in many European languages.
Huntington’s Disease
Clinical Rating Scale
Neurorehabilitation
Other Choreas
Clinical Rating Scales
Online Medical Education
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
Other Choreas
- Diagnostic approach to childhood-onset Chorea by Juan Darío Ortigoza-Escobar
- Autoimmune Chorea by Jeroen Kerstens
- 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
Cross-cutting thematic areas
- New Insights into Molecular Pathogenesis and Therapeutic Opportunities by Sarah Tabrizi
- Genetic therapies and therapy developments for rare movement disorders by Willeke van Roon-Mom
Patient Journeys
Available in many European languages.
Patient Journey for Huntington’s Disease
Information for Patients – Endorsed by ERN-RND
Available in many European languages.
GNAO1-related Disorders
Information for Patients
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.
Patient Organisations
Clinical Studies and Trials
Patient Registries (to which ERN-RND members contribute)
