Are you aware of OIFE’s closed Facebook peer group for adults who have OI? We have now reached the great milestone of one thousand members with OI. But there is room for more, so keep telling your OI-friends about it! Who can join? The group is open only for people who have OI themselves. This…
Through our peer groups on Facebook, we sometimes get in touch with people with OI who have symptoms of the rare condition Basilar invagination (BI) without being aware of what it is and what they should do about it. Because there is so little awareness about this rare but serious complication, we would like to…
Are you stuck in your home because of COVID-19? Are you bored? Can’t go to the gym or swimming pool? Don’t worry, a group of volunteers from OIFE are inviting you to join a FREE virtual wheelchair aerobic session/cardio exercise every Sunday and Wednesday on Zoom! What it is: People with OI doing exercises together…
We need your help! OIFE and EURORDIS need your opinion on future policy for people with OI and other rare diseases! If enough people with OI worldwide provide an answer to this survey, it will help us shape the future of rare disease policies regarding access to health care, medical and social research and diagnosis…
We bring you the following message from European Medicines Agency (EMA): “The EMA needs many detailed studies to confirm that a vaccine is safe, provides adequate protection and is of suitable quality. As a public-health body safeguarding medicines in the European Union (EU), EMA will only approve a vaccine for COVID-19 after a thorough evaluation…
In 2021 Jon Kristian (12) will be one of the faces of Rare Disease Day – an annual international awareness day celebrated on the last day of February. Jon-Kristian lives in Bergen, Norway. He loves doing e-sport and playing board games with his family. Once a week he makes dinner for the family, together with…
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 OIFE will update this page with links to resources about COVID-19 and osteogenesis imperfecta. We have created a shortlink to this page to make it easier to remember. If you type in the following in your browser, you will be redirected to this page oife.org/covid19 Are people with OI in the risk group? We…
We were very sad to receive the news about the passing of the founder of the Brittle Bone Society, dr. Margaret Grant. We send our condolences to her family and friends from OIFE and the international OI-community. You can write a Tribute or share a memory on a website dedicated to Dr. Margaret Grant MBE…
