Rare Diseases Denmark, Denmark
Birthe Byskov Holm joined the EURORDIS Board of Directors in 2012.
She has a long history of active participation in patient organisations. She became involved in the field of rare diseases because her son was born with the rare disorder Osteogenesis Imperfecta.
Birthe has been a member of the Danish Osteogenesis Imperfecta Association since 1983 where she has acted as President and Vice-President and she is also a co-founder and currently President of the Danish rare disease alliance (Rare Disorders Denmark).
Birthe was a EURORDIS nominated patient representative at the Committee of Orphan Medicinal Products (COMP) of the European Medicines Agency (EMA) where she held the position of vice-chair until 2012.
e-mail: bbh@sjaeldnediagnoser.dk