On August 4th the OIFE joined EURORDIS and signed the EU4Health campaign “Europe, Let’s Do More for Health”. The campaign calls for targeted and effective EU action to ensure that everyone is able to enjoy healthy lives in healthy environments. The European organizations who has joined EU4Health call for an EU leadership that respects EU…
ICCBH Virtual Forum: Bone Fragility Disorders in Children From 18th – 20th of November 2020 the International Conference for Children’s Bone Health (ICCBH) will host a virtual forum about bone fragility disorders in children, including sessions about osteogenesis imperfecta (OI). OIFE is one of the collaborators and contributors in the scientific programme. What is the…
Interview with Nicklas Luginsland – Esoccer player with OI Can you tell a little about yourself? My name ist Niklas Luginsland, 24 years old. Currently I live at home in Germany with my parents and my brother. One year ago I finished my Bachelor in Public Management. During my studies I lived together with 3…
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…
Who are you and what do you do? My name is Chiara and I am a writer/creator and a performer with a disability. I am Italian and I am 35 years old. I work in different fields like performing arts, contemporary theatre and contemporary dance. In what way has OI affected your art? Honestly, I…
Dr. Richard W. Kruse recently published a new book on surgery in OI. OIFE was one of the consultants in the writing of the book, to secure that the voices of people with OI were represented. But dr. Kruse is not only a writer. He’s a busy doctor involved in many different projects and activities…
The European Conference on Rare Diseases (ECRD) was originally planned to take place in Stockholm in May. Because of the Corona virus, the conference was moved online to May 14th and 15th, which made it possible for more people from OIFE to attend. Five people represented OIFE specifically and you can read about their experiences…
At the OIFE AGM 2020, which took place on Zoom on May 9th, we welcomed Bruno van Dijck as a new member of the OIFE Executive Committee (EC). Bruno was elected for four years as the new 2nd Vice President of OIFE. OIFE’s Youth Coordinator Stephanie knew Bruno already, but through the interview below, she’s…
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…
