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 challenges, achievements, and future goals of the Taiwanese OI community.

Who are you and what is your relationship to OI?

My name is Guo, Bo-Ling. My mother and I live with Osteogenesis Imperfecta (OI). I joined the association at age 12 and now serve as a supervisor and the contact person with the OIFE.

How many people with OI does your association have?

We are in contact with around 190 people with OI, including 89 active members. According to official records until January 2026, there were 427 registered OI patients in Taiwan.

Can you tell us about the situation for people with OI in Taiwan?

OI is a rare disease in Taiwan. Many patients face frequent fractures and mobility challenges, affecting daily life, education, and work. Taiwan has a National Health Insurance system that provides basic medical care and rehabilitation, but there is still room to improve when it comes to integrated care and broader social support.

Can you tell us about your organization? When was it founded? How is it managed?

Our association was founded in 1999. The members are people with OI and their families. The organization is led by a 12-member board, with a chairperson leading the team. Board members serve on a voluntary basis and meet every three months. Daily operations are supported by a secretary general, a social worker, and a part-time accountant, along with the help of many volunteers.

How many members do you have? How do you recruit more members?

We currently have 89 members. Most new members learn about us through their doctors and then reach out to us directly. We also share information through media, online platforms, and different types of outreach materials to recruit more members.

What are the biggest challenges for your organization?

Privacy regulations make it difficult to reach new patients directly. In addition, our members’ needs are diverse. The members are spread across different regions. It takes a lot of effort to coordinate resources and plan activities that truly meet their needs. Increasing participation and building a stronger sense of community are big challenges for us.

Do you have projects you want to tell us about? What is your biggest success?

We provide medical subsidies and emergency financial support to the patients in need. We also organize activities, scholarships, and caregiver support programs to encourage participation and improve quality of life. In addition, we have sponsorship and “dream” projects that connect social resources and support personal goals. One of our biggest achievements has been building a supportive community that helps patients feel more confident and connected.

What are your plans for the future?

We hope to strengthen connections and provide more support for patients and their families, encourage greater involvement and empower younger members. We also plan to continue improving our team capacity and resource integration. Furthermore, we aim to explore a sustainable model for long-term development and eventually establish a dedicated center that can provide education, vocational training, helping people with OI live more independently.