The congress' contributors

Astri Arnesen comes from a family affected by Huntingtons Disease (HD). Her mother developed the disease throughout her adolescence and her disease had huge impact on the entire family. Her brother passed away with HD 10 years ago and her sister died last year after suffering from various and steadily growing symptoms for more than 20 years. She has been engaged as a patient advocate and within the Huntington community for over 40 years. She joined the board of the European Huntington Association (EHA) and since 2016 she has been the president and CEO. This position enables her to work full time for the community. She is also very much involved in advocacy and the neurology patient community through her position in the board of the European Federation of Neurological Associations (EFNA) since 2019 and has served as President since 2023. She has also been a patient representative in the European Reference Network for Rare Neurological Diseases (ERN-RND) since 2017.

She is educated as a teacher for people with learning difficulties and disabilities. She has an additional university degrees in developmental psychology, communication, social skills, management and innovative processes.

She lives in Kristiansand, a town in the southern part of Norway together with her husband.