By Jacob Wittorf, OIFE Board Member For many people with OI, excess weight adds to pain and limits mobility. In Aarhus, Denmark, doctors have made weight a regular part of care, helping patients discuss a sensitive topic in a supportive and practical way. At the OI clinic at Aarhus University Hospital in Denmark, conversations about…
As Ingunn wrote in her editorial, in 2026 we are organizing a topical meeting in Copenhagen about phases of adult life with OI – including getting older with OI. The meeting will be held from June 18 to 21 in Scandic Strandpark hotel, close to Copenhagen international airport. What kind of topics would YOU like…
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…
On 24 February 2025 in Brussels – EURORDIS hosted their Black Pearl Award show, where they announced the final winners of the 14th edition of the Black Pearl Awards, celebrating the extraordinary individuals, organisations, and companies driving progress for people living with a rare disease. Stephanie Claeys from the OIFE Board was invited as a guest…
Interview with Sara Haumann, graduated doctor from the University of Southern Denmark Tell us about yourself and what you are working on! I am a recently graduated doctor from the University of Southern Denmark. From early on I had an interest in endocrinology, and especially the conditions related to bone. When I got the opportunity…
Get in Touch! Jannie D. Hald, MD, PhD from Aarhus University Hospital in Denmark is searching for more OI-professionals in Denmark, Finland, Iceland, Norway and Sweden for the Nordic OI-Collaboration. Synergy: Many similarities due to physically close location The Nordic countries are physically located close together and share many similarities including a long tradition for cooperation.…
Matilde Medum Nielsen has volunteered to help on the OIFE Youth Coordinator team. Matilde is from Denmark and was born with OI type III. She has been living in Aarhus her entire life until July 2022, when she moved to Townsville in Australia to study and fulfill her dream of becoming a marine biologist. Besides…
My name is Malene Sillas. I‘m 27 years old (soon to be 28) and I was born with OI type 1/4. Since I was born, my family has attended the national OI meetings in Denmark, and through these meetings, I have made lifelong friendships that are still a very important part of my life today.…
My name is Lars Folkestad. I am an associate professor and staff specialist at the department of endocrinology at Odense University Hospital. There I am part of the team that follows and cares for adults with OI. We are aiming towards a multi-disciplinary approach to our outpatient OI clinic visits, but most of our efforts…
