ERN-RND patient advocates visited our coordination office and the University Hospital Tübingen in Germany on 30 January 2020.
The following patient advocates were present:
- Astri Arnesen, President of the European Huntington Association
- Lori Renna Linton, Euro-HSP
- Mary Kearney, FARA Ireland
- Monika Benson , Executive director of Dystonia Europe
- Marek Parowicz, founder of AHC18+ e.V.
- Lubomír Mazouch, Spolek pro Atypické Parkinsonské syndromy (Polish association for Atypical Parkinsonian Syndromes)
The European Huntigton Association (EHA) represented by president Astri Arnesen during this visit put together a video featuring interviews of patient advocates explaining why ERNs and ERN-RND are essential for better diagnosis and care of rare disease patients in Europe.
Thank you to the European Huntington Association for this very nice video which you can view on their YouTube channel here.