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…
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…
Living with Osteogenesis Imperfecta and growing up in a family affected by the condition, Guo Bo-Ling has dedicated many years to supporting the OI community in Taiwan. As a supervisor of the Taiwan OI Association and liaison to OIFE, she works to strengthen connections, improve support services, and empower patients. In this interview, she shares the…
Written by Dimitra Micha, member OIFE Scientific Advisory Board The 26th annual OIF Scientific Meeting in Chicago (April 22-24 2026) welcomes key OI developments from US and Canada scientists and clinicians working on improving health conditions for people with OI. Attendance of more than 100 OI professionals ensures adequate representation of scientific outcomes and clinical…
Interview with Agnieszka Czoch-Tokarczyk from the Polish organization. She agreed to share the story of her family with a child with OI for Rare Disease Day Campaign 2026. After getting to know the OI community, what has surprised you the most and what has helped you as a parent? “I first met the OI community…
Interview with Karina Prokopiuk, co-founder of the Ukrainian Association Crystal People. For Rare Disease Day campaign 2026, Karina agreed to share her experience with us, being the mother of a children with OI. Can you share your experience with balancing personal and professional life with a child with OI? Balancing motherhood and professional life with…
The Michael Geisman Fellowship Grant program awards funding to post-doctoral trainees who are currently working on projects with clear relevance to osteogenesis imperfecta (OI), or who have projects that will enable them to develop expertise in OI research. Applicant Requirements: Applicant must hold an MD, DDS, DO, or PhD, and be appointed at the level…
After some various travel hickups we arrived Dundee for the Brittle Bone Society (BBS) Conference 2025 on July 23. It was three days of fun and educational events including news from research, advocacy and stories of lived life with OI. The series of events started with a scientific symposium featuring an international line-up of world-leading…
