Birthe Holm
Patient Representative at Committe for Orphan Medicinal Products (COMP) at the European Medicines Agency (EMEA)

Birthe Holm has been involved in rare diseases since her son Michael was diagnosed with Osteogenesis Imperfecta (OI) in 1983. After having been actively involved in the Danish OI Association, she founded the Danish national alliance for rare diseases, of which she is currently Vice President. She is also the Chair of the Board of the Danish Centre for Rare Diseases and Handicaps, and is an active member of the European OI Federation. Birthe was first nominated based on her extensive experience working for patient groups in collaboration with health regulators and professionals. After six years serving at the COMP, she has a deep understanding of regulatory affairs, clinical development and research stimulation, as well as widespread contacts with patients from a broad range of rare diseases. She also brings to the position a degree in law, and a professional background is public service. She is fluent in English and has been promoting the Orphan Drug Regulation at conferences and workshops all over Europe.