Interview with Michel Cordey Despite his OI and being a wheelchair user, Michel was the first of four siblings to move out of his parents’ home. That, he says, was the turning point towards an independent life. This independence has led him to travel, to present a short film in China, to build a network…
Are you a researcher of a clinician working with OI? Make sure you save the date for the next International Conference on Osteogenesis Imperfecta (ICOI2028), which will take place in Bologna, Italy! Held every three years, the International Conference on Osteogenesis Imperfecta is the leading global scientific meeting dedicated to OI, bringing together clinicians, researchers…
By Wang Yiou, Founder of China Dolls For nearly two decades, I have had the privilege of working with thousands of people living with OI in China. And as the founder of the China-Dolls Center for Rare Disorders, I have learned that statistics alone never tell the full story. Every percentage represents a child with OI…
After our Hong Kong conference, our relationship with the OI-organizations in Asia got much closer. As a result we got three new member organizations in Asia – Taiwan, Korea and Japan. In this interview you get to meet the Japanese organization and their chair Tomoyasu Tashiro. Who are you and what is your relationship to…
The 2nd edition of OIFE Magazine 2026 is out and this time our focus topic is OI in #Asia. In addition to a guest editorial from the founder of China Dolls you can get to know our three new Asian member organizations from Asia – Taiwan, Korea and Japan. In addition to from news from…
When we organized the East meets West conference for patient groups in Hong Kong in 2025, there was no specific OI-group in Hong Kong. This has now changed and we welcome the Hong Kong OI Association, which was recently established. The group is led by Anna Lam, who has OI herself and and you can…
We are happy to say that OIFE’s general assembly, which took place on Zoom last night went well. We were 35 participants from 15 European and 3 associate member organizations – in total 17 countries. In addition four members of our advisory board took part and contributed to some of the topics. The voting members…
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…
We’re inviting women with osteogenesis imperfecta (OI), age 35 and older, to take part in a new survey focused on menopause and OI. This project is part of the OIF Adult Health Initiative and is being conducted through The Global Adult OI Initiative, an international collaboration of OI clinicians, researchers, and patient advocacy partners, including contributors…
