Birthe Byskov Holm

Birthe Byskov Holm


Rare Diseases Denmark, Denmark
Rare Disorders 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.

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases