I stepped off the train with my heart still racing, nostalgia already settling in. It had only been three days, but as I replayed the moments, I realized something remarkable had happened in that little corner of Germany surrounded by nature, just outside the charming town of Duderstadt. The Youth Event organized by DOIG had…
Researchers and clinicians working on Osteogenesis Imperfecta (OI) are invited to submit abstracts and register for the OIFE online Investigator Meeting 2026, taking place on Zoom on 13 November 2026 from 2 – 7 pm CET (10am – 2pm EST). This annual global online meeting provides a unique opportunity to present and discuss the latest…
Mark your calendars for the OIFE Topical Meeting “Phases of Adult Life with OI and other Rare Bone Conditions”, taking place 9-12 September 2027 at Quality Expo, Oslo, Norway. The Board of OIFE has decided to move the Topical Meeting to September 2027, taking place in Oslo instead of Copenhagen. This to keep the participant…
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…
OIFE advocates for patient involvement in all clinical trials and research for Osteogenesis Imperfecta (OI) and other rare diseases. Advanced Therapy Medicinal Products (ATMPs) are innovative medicines for human use based on genes, cells, or tissues. This includes stem cells, that are currently being researched for OI. EURORDIS hosted two webinars about the topic: Webinar…
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…
In Korea, there are very few doctors with enough experience in OI , and because of Korea’s special health insurance system, treatment of OI can be a heavy financial burden for people with OI and their families. In this interview, the chairperson of the patient advocacy organization for OI – Mrs. Du Ri Kim shares…
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…
