Researching woman looking through microscopeEVENTS

Registration and abstract submission open – OIFE Investigator Meeting

Registration and abstract submission is open now! The umbrella association Osteogenesis Imperfecta Federation Europe (OIFE), together with members from our Medical Advisory Board, invite you to register for the third virtual European Investigator Meeting for osteogenesis imperfecta (OI) on November 15th, 2024 (on Zoom). The event is free. Goals Highlight new OI research Facilitate collaboration…

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ADVOCACY

The IMPACT Survey has a new home!

Launched in time for Wishbone Day 2024, the new IMPACT Survey website helps to raise awareness of osteogenesis imperfecta by capturing the lived experience of the condition, as told by people with OI, their caregivers and close relatives. On the IMPACT Survey website, you will be able to find out more about this landmark survey and…

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Logos of member organizations of ESEOIFE

OIFE Affiliated Member of ESE

The OIFE has recently been accepted as a Patient Advocacy Group (PAG) affiliated member of the European Society of Endocrinology (ESE). ESE see this as a two-way partnership, since PAGs play an essential role in ensuring that patients throughout Europe have access to the best information about their condition as well as to diagnosis and…

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Slide showine group Photo of the OIFE boardMEMBERS

OIFE Leadership Meeting

Our annual Leadership meeting for our member organizations took place on February 27th on Zoom. 23 organizations were represented from 21 different countries around the world, which is great. In total we were 48 people attending. The meeting covered news from OIFE, including how and why we work with industry, clinical trials, our Stronger Together…

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MEMBERS

Meet OIFE delegate Jesús from Panama

I am Jesús Camilo Osorio Barahona, I am a happy husband, being married to Daysi, a woman that supports me and believes in me.  I am the father of two beautiful daughters, Lluvia and Luna (one of which has OI) and I have OI myself.  I’ve been lucky to have my parents, my wife and my…

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CONFERENCES

OIFE Investigator Meeting – a success

On the 17th of November 2023, OIFE hosted the second Virtual OIFE Investigator Meeting for the OI research community. 273 people from 48 countries signed up and more than 160 individuals attended the online event. Attendees were a mix of health professionals, scientists, OI clinicians and a lower number of representatives from industry and patient…

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OIFE

New OIFE Board

New Board Members of OIFE In 2022 we expanded the OIFE Board with 2 people and we are now seven people who are running the daily business of OIFE. The OIFE Board currently includes Anna (Italy), Jacob (Denmark), Bruno (Belgium), Malene (Denmark), Ingunn (Norway), Stephanie (Belgium) and Coreen (Scotland). In the latest OIFE Magazine you…

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MEMBERS

Welcome New OIFE Member CLAN!

Interview with Téa La, Community Development Officer for CLAN (Caring & Living As Neighbours) At OIFE’s Annual General Assembly on June 10th, we were happy to announce that the OIFE Board has accepted the membership application from the NGO CLAN (Caring & Living as Neighbours), to become a supporting member of OIFE. CLAN is an…

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MEMBERS

Meet OIFE delegate Isis Atuncar, Peru

My name is Isis Atuncar, I am from Peru, and I was diagnosed with OI when I was born in 1986. I had the opportunity to receive medication and surgical treatment in the USA. That treatment improved my quality of life. When we were back in Peru, my parents and other families together formed the…

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