Photo of the backside of a skullMEDICAL

What is Basilar Invagination (BI)?

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…

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Photo of a Mac showing a video of people in wheelchairs doing cardio exerciseOIFE

JOIN OIFE’S FREE VIRUS WORKOUT!

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…

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ADVOCACY

RARE2030 – Survey to shape future policy

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…

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Photo of arm getting a vaccineMEDICAL

Are COVID-19 Vaccines safe?

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…

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OIFE

Happy Holidays from OIFE!

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…

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MEDICAL

COVID-19 – info for people with OI

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 See also more resources about Covid19 in English from…

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Logo Brittle Bone SocietyMEMBERS

Rest in Peace Margaret Grant

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…

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Logo of German OI-organization DOIGMEMBERS

Rest in Peace Peter Radtke

And 2020 continue to be a very sad year. We were sad to learn that the founder of the German OI-organization Deutsche OI Gesellschaft – Glasknochen e. V., Mr. Peter Radtke passed away on November 28, 2020 at the age of 77 years. Mr. Radtke was an actor and co-founder of the “Münchner Crüppel-Cabaret”. “I’ve…

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