We are deeply saddened to learn of the passing of Birthe Byskov Holm from Denmark. For more than 40 years, Birthe was a strong advocate for the rare disease community, particularly for people living with OI after her son had been born with this condition.

She had been a member of the Danish Osteogenesis Imperfecta Society since 1983, serving for periods as both President and Vice President, and she went on to co-found and lead Rare Diseases Denmark – Europe’s very first national alliance for rare diseases.

In February, Birthe was honored with the 2025 EURORDIS Lifetime Achievement Award, in recognition of her outstanding contributions in Denmark and across Europe. Our thoughts are with Birthe’s family, friends, and the entire communities of the DFOI and Sjældne Diagnoser (Rare Diseases Denmark).