Birthe Byskov Holm, President, Rare Diseases Denmark
Birthe has been a volunteer advocate for people with rare diseases and their families since her son was born i 1983 with a rare disease.
She is one of the cofounders of the Danish Alliance for rare disease patient organizations – Sjaeldne Diagnoser / Rare Diseases Denmark (www.sjaeldnediagnoser.dk) elected vice president from the start of the alliance in 1985 and elected president since 2009.
She is currently a member of the board of the European Alliance of Rare Disease patient organization EURORDIS- Rare Diseases- Europe.
She was chair and vice chair of the Danish Osteogenesis imperfecta society 1987-2013.
She was a member of the board to a national information center for rare diseases belonging to the Social Ministry and chair of the board 1998-2010.
She has served as a member – appointed by the European Commission – representing the European patients in the Committee for Orphan Medicinal Products (COMP) 2002-2015 and as vice chair 2006-2012.
She has served in several committees, groups and boards on Danish, Nordic and European level and she also represents a broader group of patients (The Umbrella Organization Danish Patients) in the Disciplinary Committee of Danish Patient Safety Authority (from 2012) and the Medicines Committee belonging to the Danish Medicines Agency (from 2016).
She is a member of the Scientific Advisory Board to Copenhagen Centre for Regulatory Science, (CORS) University of Copenhagen.
Birthe is a lawyer of profession but now retired from professional work.