Rare Diseases Denmark
John Gerbild was elected to the EURORDIS Board of Directors in May 2025. His journey in rare disease advocacy began over two decades ago when his wife was diagnosed with Spinocerebellar Ataxia type 3 (SCA3). His commitment deepened further when one of his daughters received the same diagnosis.
He has since become a dedicated leader within the Danish Ataxia and HSP Association (DK-A&HSP), supporting individuals and families impacted by ataxia and hereditary spastic paraplegia. Under his leadership, the association’s membership has reached more than half of all those diagnosed in Denmark.
At the European level, John has served on the board of EuroAtaxia since 2014 and has represented the organisation within the European Federation of Neurological Associations (EFNA) since 2019. He is an ePAG advocate in the European Reference Network for Rare Neurological Diseases (ERN-RND) and a graduate of the EURORDIS Open Academy on Medicines Research and Development.
John also serves as Vice-Chair of Rare Diseases Denmark, the national alliance representing over 50 patient organisations. He advocates for stronger political and scientific attention to rare diseases, including cross-border solutions for testing new treatments. His work contributed to the establishment of a validated clinical trial site at Rigshospitalet in Copenhagen. Since 2024, he has represented Rare Diseases Denmark in the EURORDIS Council of National Alliances.
Prior to his full-time advocacy work, he worked in the shipping sector and later in telemedicine implementation.