OIFE

New OIFE Board elected

On October 23rd around 30 delegates from OIFE’s member organizations came together to elect a new and expanded Board. This would replace the Interim Board elected at the establishment meeting of OIFE under Belgian law (March 8, 2022), which consisted of the former members of the Executive Committee (OIFE EC). Three candidates had put themselves…

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MEMBERS

Ukraine – Before and After

Three times our life was divided into “Before” and “After”… Written by Lyubov Petrova, mother of a daughter with OI & chair of the Ukranian OI-organization.  The Diagnosis First it was my daughter’s diagnosis with Osteogenesis Imperfecta (OI)… “Before” was joy of the birth of a long-awaited beautiful baby-daughter, registration to the best kindergarden in…

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CONFERENCES

Registration is open – OIFE Investigator Meeting

The umbrella association Osteogenesis Imperfecta Federation Europe (OIFE) is together with members from our Medical Advisory Board invite you to register for the very first virtual European Investigator Meeting for osteogenesis imperfecta (OI), which we hope will become an annual tradition. The event will take place on Zoom November 18th 2022, 2 PM – 7…

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OIFE

OIFE AGM 2022

On Saturday June 4th we were ca 35 people representing 18 member organizations, who came together for OIFE’s Annual General Meeting (AGM) 2022 on Zoom. The agenda included:  Internal news & updates Approval of OIFE’s Annual Report 2021 Approval of financial report 2021 Dissolution of OIFE 1 in the Netherlands because OIFE 2 has been…

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OIFE

OIFE Leadership Meeting

On January 24th OIFE hosted its 2nd European Leadership meeting to inform our member organizations about news. More than 25 representatives from most of our European member organizations attended.  Topics included among others: Information about future events Status on the restructuring of OIFE and moving to Belgium (OIFE 2.0.) Status on the IMPACT survey News…

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OIFE

Pain & OI Project started

On January 25th 2022 we organized the kick-off of the Pain & OI project, which is a collaboration between the OIFE and the Osteogenesis Imperfecta Foundation (USA) and a group of dedicated professionals who have experience on pain management, pain research and/or pain & OI. We had 21 participants from 10 different countries at the…

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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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