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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EDITORIALS

What does OIFE mean to you?

By Ingunn Westerheim, OIFE President Yesterday we received the first version of the new video about OIFE from “Balancing Life with OI”. We cannot wait to share it with the rest of you. One of the questions that was asked in the video was “What does OIFE mean to you?”. This can be a tricky…

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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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Advertising image - what is the toolbox on pain and what should be in it?EDUCATIONAL

Toolbox on pain and OI

In March 2023 OIFE started the work of creating a toolbox on pain and osteogenesis imperfecta.  The aim of the toolbox is to enable people with OI to learn more about pain management. It will also include information and tips which you can discuss with your care provider when communicating around pain. What would YOU…

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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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OIFE

OIFE now in Belgium

We are very happy to announce that the lengthy process of reestablishing Osteogenesis Imperfecta Federation Europe (OIFE) in Belgium has now come to an end. OIFE is reestablished as a new legal entity in Belgium and dissolved as a legal entity in the Netherlands.  Why did we do this? The process started because we had…

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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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EDITORIALS

More than just a survey!

We know you hate surveys. We truly do. Every time you buy an object, order take away, online grocery or come home from a holiday, you get a survey. Are you happy? Unhappy? Do you have something to complain about? Would you like to recommend our app? Do a review? Please, please, please provide us…

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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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