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 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…
At the OIFE 2025 conference we had the pleasure of having Matt Bolz-Johnson from EURORDIS present as a speaker. And honestly we could not ask for a better contributor at our 2025 conference in Oslo! Matt Bolz-Johnson reminded us about the importance of including mental health in our advocacy for better care and services. He…
Dear members of the international OI-community! In Australia the champagne has been uncorked already, but in the rest of the world we are in different ways preparing the celebration of another year coming to an end. It is also a celebration of the opportunities of a New Year called 2022, which we hope will be…
May 6th is a special day for the OI Worldwide community! Wishbone Day is the International Day for Osteogenesis Imperfecta aimed to improve and boost awareness about OI. During last year’s OIFE Annual General Meeting many of the participants expressed a wish to create a more coordinated international approach and campaign for this International Awareness Day.…
Today marks the launch of the OIFE awareness campaign connected to Rare Disease Day which takes place on the last day of February each year. What is Rare Disease Day? The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on people’s…
It’s been a challenging year – 2020. And it will possibly be a challenging holiday season for many. But let’s not forget that we are here for each other – in the big international OI-community! On behalf of Osteogenesis Imperfecta Federation Europe (OIFE) we wish all our followers and supporters happy holidays and a much…
The last couple of months have been anything but easy. For all of us, this pandemic has arrived as some kind of storm, about which we heard something on the news, but never really thought would have arrived and jeopardized so much our daily, ordinary and chaotic days. I live in Italy, one of those countries where…
