Huntington’s Disease and other Choreas

ERN RND: Patient Journey Movie Huntington’s Disease

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.

The movie shows the different family members’ coping strategies over the years, thereby capturing both their struggles and their moments of light.

Patient Journey Huntington’s Disease (patient advocate)

“When I was 15 years old, I remember my father had started to act strangely. He was very apathetic, had mood swifts, was aggressive and had many obsessions.” This is what our patient advocate Ruth Blanco recalls when she looks back on the time when the first symptoms of Huntington’s disease appeared—though at the time, no one realized they were related to the disease.”
Having a document like our Patient Journey for Huntington’s Disease would have been a great support back then – and is still today.

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