A young girl from Asian origin sitting in a manual wheelchair.OIFE

New OIFE Youth Coordinator

Interview with Simey Truong, Germany My name is Simey Truong. I am 26 years old and have OI type 3, so I am bit short (I am only 1.12m tall) and sitting in a wheelchair. During my childhood I had a lot of fractures, but they didn’t stop me from experiencing a lot. I’m a…

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OIFE

In 2021 we made an impact together!

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…

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MEDICAL

Pain & OI Project reestablished

OIFE wants to focus more on pain & OI, since this is reported to be the most important challenge for people with OI besides fractures. Because of the IMPACT survey we had to postpone our pain project until 2022. But now we have reestablished our OIFE project on Pain & OI. What has happened? In…

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Profile photos of four smiling OI-researchersCONFERENCES

OIFE INVESTIGATOR MEETING 2022

SAVE THE DATE – 1st VIRTUAL OIFE INVESTIGATOR MEETING November 18th 2022, Online The umbrella association Osteogenesis Imperfecta Federation Europe (OIFE) is together with members from the Medical Advisory Board of OIFE inviting you to save the date for the very first European Investigator Meeting for osteogenesis imperfecta (OI). This virtual one day meeting will…

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

JOIN OIFE’S FREE VIRUS WORKOUT!

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 on Zoom for 30-45 minutes Instructions from seated/wheelchair using instructors from videos on YouTube (shared screen on Zoom) An informal offer from…

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OIFE

We did it together!

The Impact Survey is now closed! We are very happy to announce that with the tremendous help of organizations and individuals around the world, we reached our ambitious goal of more than 2200 responses from 66 countries! More details to come. Thank you to the Osteogenesis Imperfecta Foundation, to Wickenstones and Mereo Biopharma for support…

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ADVOCACY

The IMPACT Survey is live – spread the word!

The IMPACT Survey is a joint initiative between the umbrella organization Osteogenesis Imperfecta Federation Europe (OIFE), the OI Foundation & the pharma company Mereo BioPharma. Together we’re delighted to announce that English version of The IMPACT Survey is now live and will be running until 10th September 2021. Next week we will also launch the survey…

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OIFE

OIFE AGM 2021

Our Annual General Meeting (AGM) 2021 took place on Zoom on June 19th. OIFE AGM part 1 (the formal business part) – from 11.00 – 13.00 OIFE AGM part 2 – OIFE projects and collaborations from ca 13.30 – 16.00 CET included: – Prelaunch of the IMPACT survey – News from research (BOOSTB4, TOPAZ, SETRUSUMAB, EURR-BONE…

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Text about OIFE AGM and photo of a round table with people around. Four colorful bubbles to symbolize discussion on the table.EVENTS

Register for OIFE AGM 2021!

Our Annual General Meeting (AGM) 2021 will take place via Zoom on June 19th. OIFE AGM part 1 (the formal business part) – from 11.00 – 13.00 OIFE AGM part 2 – OIFE projects and collaborations from ca 13.30 – 16.00 CET which will include: – Prelaunch of the IMPACT survey – News from research…

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