President, EFNA &  President and CEO, EHA

When Astri was born in Norway in 1962, her mother had not yet developed symptoms of Huntington’s Disease (HD), but she became sick a few years later. Her disease progressed throughout Astri’s childhood and adolescence until she passed away in 2004.
Astri has been engaged as a patient representative and advocate since the mid-1980s.  From 2004-2014 she was the President of the Norwegian Huntington Association & from 2010  joined the board of the European Huntington Association (EHA), to which she was elected President in 2016.
Astri now works full time for EHA, but previously was head of department for a unit providing expertise in special educational needs to stakeholders in the educational sector.
Astri is educated as a teacher in learning disabilities & has additional university degrees in developmental psychology, management and innovative processes.

Senior Consultant Neurologist and Founder, Dr Bindu Menon Foundation. OneNeurology Ambassador 

Executive Director, EFNA. 

Dr. Orla Galvin came to patient advocacy with a PhD in Medicine and background in drug discovery and design in both academic and industry environments.  Transitioning to advocacy work at the umbrella patient organisation Retina International, Orla led high impact, multi-stakeholder socio-economic studies, patient preference studies, and accessibility studies across the globe assessing both rare and common conditions.

Frédéric Destrebecq is the Executive Director of the European Brain Council since October 2014. In this capacity, he is responsible for providing strategic direction and leadership while managing the day to day operations of EBC and its ongoing relationships with its member associations and other stakeholders, as well as representing the organisation in various European and national forums.

Fred holds a Master Degree in Political Science and International Relations from the Université Catholique de Louvain (Belgium). He also studied at the Institut d’Etudes Politiques (Paris) and University of Wales College (Cardiff), in the framework of the former EU Socrates exchange programme. Prior to EBC, Fred served the European Union of Medical Specialists (UEMS) as Chief Executive Officer, and previously as Director for European Affairs.

Head of EP BrainHealth Coordination Office, Germany

European Research Programmes National Coordinator,

Chief Scientist Office

Ministry of Health, Israel 

First Vice President of the World Federation of Neurology, Head of Neurology at Razi Hospital in Tunis, and Ambassador for the One Neurology Partnership

Senior Advisor on Internally Displaced Persons at United Nations OCHA