ADVOCACY

OIFE at Rare Disease Week

Rare Disease Week (RDW) is a brand new week-long series of events organized by EURORDIS which started February 22nd 2021. It included many webinars that targeted on rare disease patient advocates. The goal was to empower them with knowledge and skills so they can effectively participate in advocative activities at a European level and influence…

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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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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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ICCBHCONFERENCES

OIFE co-hosts at ICCBH Virtual Forum

The International Children’s Bone Health Conference (ICCBH) is hosting a virtual forum from November 18-20 and we encourage professionals and patient representatives to attend. Target group The meeting programme of ICCBH Virtual Forum is designed for healthcare professionals and researchers.  Pharma industry regulations do not allow open invitations to members of the public to attend. However,…

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ADVOCACY

OIFE needs patient representatives

Are you interested in research & policy work? As a European umbrella organization, we are more and more often asked to recruit patient representatives for research projects related to OI. This includes both clinical research and basic research. OIFE therefore needs to recruit and educate more people who can represent the voices of people with…

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MEMBERS

IOIF (India) new OIFE Member

OIFE’s ordinary member organizations are European and our main activities are based in Europe. But we collaborate with OI-organizations around the world with the intention to exchange ideas, information and best practices in order to improve lives of people with OI. We have the great pleasure to announce that the Board of OIFE has voted…

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ADVOCACY

OIFE supports EU4Health campaign

On August 4th the OIFE joined EURORDIS and signed the EU4Health campaign “Europe, Let’s Do More for Health”. The campaign calls for targeted and effective EU action to ensure that everyone is able to enjoy healthy lives in healthy environments. The European organizations who has joined EU4Health call for an EU leadership that respects EU…

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Bruno Van DijckOIFE

Bruno new 2nd Vice President

At the OIFE AGM 2020, which took place on Zoom on May 9th, we welcomed Bruno van Dijck as a new member of the OIFE Executive Committee (EC). Bruno was elected for four years as the new 2nd Vice President of OIFE. OIFE’s Youth Coordinator Stephanie knew Bruno already, but through the interview below, she’s…

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