Astri Arnesen | President
European Federation of Neurological Associations

I come from a family affected by Huntingtons Disease (HD).  My mother developed the disease throughout my adolescence and her disease had huge impact on the entire family.  My brother passed away with HD 10 years ago and my sister died last year after suffering from various and steadily growing symptoms for more than 20 years.  I have been engaged as a patient advocate and within the Huntington community for over 40 years.  I joined the board of the European Huntington Association (EHA) and since 2016 I have been the president and CEO since then.  This position enables me to work full time for the community.  I am also very much involved in advocacy and the neurology patient community through my position in the board of the European Federation of Neurological Associations (EFNA) since 2019 and have served as President since 2023.  I have also been a patient representative in the European Reference Network for Rare Neurological Diseases (ERN-RND) since 2017.  I am educated as a teacher for people with learning difficulties and disabilities.  I have additional university degrees in developmental psychology, communication, social skills, management and innovative processes.  I live in Kristiansand, a town in the southern part of Norway together with my husband.