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…
Interview with Agnes Suard, France Who are you and what is your relationship to OI? I am Agnes Suard, 55 years old. I am vice President for around one year of AOI, the French OI association. I don’t have the disease, but my husband and three of my 4 children have it. So, I have…
My name is Isis Atuncar, I am from Peru, and I was diagnosed with OI when I was born in 1986. I had the opportunity to receive medication and surgical treatment in the USA. That treatment improved my quality of life. When we were back in Peru, my parents and other families together formed the…
My name is Ted Trahan. I am married to Sharon, and we have two adult children, Greg and Käthe. Greg has OI and we are excited to share that he is recently engaged to Natalie, who also has OI. I am one of the OIFE delegates of the associate member organization OIF in the USA.…
Interview with OIFE Representative Rageema Livingstone, Representative of OIFE’s Associate Member South Africa Who are you and what is your relationship to OI? My name is Rageema Livingstone and I live with my husband and 3 kids in a suburban area of Cape Town South Africa. I have a 16 year old daughter with type…
Interview with Andrea Medina, Representative of OIFE’s Associate Member Chile Who are you and what is your relationship to OI? I’m the founder and chairwoman of the board of Fundación de Osteogénesis Imperfecta Chile (FOICH). I have OI myself, and that is why my interest was born in creating an organization that brings together people with…
By Jennifer Cowley, Representative of OIFE’s Associate Member Australia My name is Jennifer (Jenny Cowley). I have Type 1 OI and so have 13 of my family members. I represent the Osteogenesis Imperfecta Society of Australia as the newly elected President. OI affects me personally by slowing me down when I get older. When I…
