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 the realities of living with OI in Korea, the work of the association, and her vision for a stronger future.

Who are you and what is your relationship to OI?

My name is Du ri Kim, and I am currently the chairperson of the Korea Osteogenesis Imperfecta Association (KOIA). My daughter and I both have osteogenesis imperfecta type V. After my daughter had a femur fracture at seven months old, I searched online for information and found this association. I have been active since 2005 and became chairperson in 2017.

How many people with OI does your association have?

Our association currently connects around 150 people with OI and their families.

Tell us about the situation for people with OI in Korea!

One of the biggest issues is medical cost support. Korea has a special health insurance co-payment reduction system for serious, rare, or long-term diseases, but people with OI must meet specific criteria such as genetic testing, ongoing medicinal treatment or disability registration.

Children receiving bisphosphonate treatment may receive support, but teenagers or adults who stop medication may lose the benefit. This makes fractures, surgeries, and treatment a heavy burden for patients and families. Medical and dental access are also major challenges. There are very few doctors with a lot of experience in OI, and many families rely on Professor Tae-Joon Cho at Seoul National University Hospital.

Local hospitals, especially outside Seoul, may hesitate to treat fractures because they do not have enough experience with OI, so patients may need expensive ambulance transfers to Seoul. Dental problems related to OI are often treated as general dental care, and many patients also have difficulty finding dental clinics that can treat them safely.

Families may also face painful misunderstandings because frequent fractures in children with OI can be mistaken for child abuse. Adult OI care is still insufficient, so from this year we are working to improve adult care through cooperation with the Korean Endocrine Society. Because of these challenges, Korean OI families often rely on one another through our KakaoTalk group chat.

Can you tell us about your organization?

The Korea Osteogenesis Imperfecta Association started in 2003 as a small community of people with OI. At that time, there was very little information about OI in Korea, so people gathered to share information about the disease, treatment, rehabilitation, and daily life.

Today, our association is managed by a chairperson, treasurer, board members, regular members, and associate members. We receive voluntary regular donations through a CMS system. Our official online community is currently on Daum Cafe, and we are moving and expanding to Naver Cafe so that more people can find us.

How many members do you have?

Our online community has about 700 registered members, including people with OI, families, people who suspect they may have OI, and people with similar bone conditions. Around 150 people are registered as OI patients and regular members. New members usually find us through other OI families, especially mothers of children receiving bisphosphonate treatment, as well as through websites, online communities, and social media.

What are the biggest challenges for your organization?

Our biggest challenges are low public awareness, limited funding, and the fact that our association is run entirely by volunteers. We do not have corporate sponsors, individual donations are limited, and we do not even have our own office. No one receives any salary or payment. We also need more professional support, data, and resources to advocate for better government policies. Another serious challenge is the regional gap in medical access between Seoul and other areas.

Do you have projects you want to tell us about?

One of our most important projects is our summer family camp, which has continued for more than 20 years. Today, with support from the Hyundai Motor Chung Mong-Koo Foundation, the camp is hosted by Seoul National University Hospital and is free for participating families. Around 50 people usually join.

The program includes seminars by OI specialists and cultural activities such as crafts, sand art, and recreation. For many children with OI, this camp is something they look forward to all year.

This year, we also started a smartphone film academy. Five members with disabilities, together with their families and volunteers, are creating a 10-minute short film for the Korea Parallel Smartphone Film Festival (KPSFF). The film is based on a scenario about OI, so it is especially meaningful. We hope many people will take an interest in this film and in the voices of people with OI in Korea.

What are your plans for the future?

Our future plans are to improve medical cost support for people with OI, especially the criteria for the co-payment reduction system, and to build a better care system for adults with OI. We also hope to secure more stable support for our association and strengthen our connection with OIFE and other OI communities around the world, so that people with OI and their families do not feel alone.