From 3rd – 4th OIFE was represented by Alessandra Tolaccia at the European Conference on Rare Diseases & Orphan Products (ECRD) in Prague. ECRD2026 opened with a clear message: Europe has the knowledge, the momentum and the community needed to act. Now it needs coordination, political will and implementation. Held under the theme Rare Diseases…
EURORDIS has created a new survey that aims to gather data on mental health and quality of life from people with rare conditions like OI. It includes questions on how people cope with daily stress, which support they can rely on, or how they manage to study, work, and contribute to their community while living…
For many across the rare disease community, not being understood can be as painful as the condition itself, impacting mental health and leaving people feeling invisible. This is why EURORDIS launched the EURORDIS Mental Health & Wellbeing Partnership Network. Both Alessandra Tolaccia and Rebecca T. Skarberg from OIFE have been part of the network. In…
At the OIFE 2025 conference we had the pleasure of having Matt Bolz-Johnson from EURORDIS present as a speaker. And honestly we could not ask for a better contributor at our 2025 conference in Oslo! Matt Bolz-Johnson reminded us about the importance of including mental health in our advocacy for better care and services. He…
REGISTRATION IS OPEN – EARLY BIRD DEADLINE JANUARY 31 Lack of understanding and poor management of pain severely impacts the quality of life of children and adults with OI. Under the title “Balancing life with OI” we are organising a topical meeting on the neglected subject of the causes, assessment and management of pain in…
Background Pain is reported to be the main challenge for people with OI besides fractures. More than 60 percent of people with OI have chronic pain, and the percentage and complexity increase with age. In spite of this, there is very little information about how you can manage pain as a child or adult with…
“Yoga is a light, which once lit will never dim. The better your practice, the brighter the flame.” B.K.S. Iyengar (Yoga Guru) What exactly does yoga mean? Can anyone with OI practice yoga, no matter how limited their movement is? And how can yoga help in everyday life? Archana, the President of OIFE’s member…
Interview with Ida Vandsøe Madsen, student at the Department of Anthropology at University of Copenhagen, Denmark Ida Vandsøe Madsen is a Ph.D.-student at the Department of Anthropology at the University of Copenhagen. Anthropology is the study of human biological and physiological characteristics and their evolution. She did her Master’s Thesis (final project) on OI as…
Summary by Ingunn Westerheim, Dr Oliver Semler and Dr Lars Folkestad The OIF investigator Meeting is normally held in Chicago, but took place online on April 15th 2021. OIF Investigator Meeting The program chair this year was Dr Deborah Krakow who is Professor and Chair of the Department of Obstetrics and Gynecology at UCLA. This…
