Interview with Adalbert Raimann, MD, PhD and Gabriel Mindler, MD Gabriel and I are pediatric bone specialists based in Vienna. Most of our working days are spent with children and adults who live with Osteogenesis imperfecta or other rare bone conditions. Over time, many of our patients have come not only from Austria, but also from…
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…
The OIFE Youth Event 2025 was organised by the OI Polish organization (Stowarzyszenie Osób Z Wrodzoną Łamliwoscią Kosci) who took care of delivering an amazing week-end full of unforgettable activities in Warsaw. SEPTEMBER 4TH This year was a bit different from others because we had a special bonus day for those who wanted to do…
The OIFE Youth event 2025 will take place from 4th to 7th of September 2025 in Warsaw, Poland. Target group: People with OI age 18-35 from European countries. The goals of the OIFE Youth Event are: * sharing experience & ideas across borders; * networking and getting to know young people with OI in other…
SAVE THE DATE! This year the Polish OI-organization Stowarzyszenie Osób z Wrodzoną Łamliwością Kości – Polska is organizing the Youth Event 2025 in Warsaw. If you have between 18 and 35, living in Europe and part of the OI community: this is your chance to live an amazing experience! Registration coming soon…
Interview with Agnieszka Czoch-Tokarczyk, President of Association of People with Brittle Bone Disease – Poland Who are you? My name is Agnieszka Czoch-Tokarczyk, I am the president and one of the founders of the new Association of People with Brittle Bone Disease-Poland (together with Karolina, Ewa, Magda and Izabela). In Polish they are called Stowarzyszenie…
OIFE Youth Event was supposed to take place in Poland in August 2020. It was later moved to August 2021. Because of the very uncertain situation around vaccines in Europe and travel restrictions due to Covid-19, the OIFE Executive Committee has decided to move the OIFE Youth Event to Poland in August 2022. This in…
Interview with Michal Daszkowski – curling player with OI Can you tell a little about yourself? I’m 47 years old and live in Warsaw, Poland. At the moment I’m living alone in my pretty accessible flat. I am using a wheelchair for almost my every daily activity. I am working as a freelancer (IT-system and…
