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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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 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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OIFE

Founding Fathers and Mothers

In 2020, the founding fathers and mothers of three OI societies sadly passed away. One of them was the first person worldwide to initiate a patient organization for OI. Many were following her example, and some years later, the idea of founding a European umbrella organization was born. Former OIFE president Ute Wallentin, has written…

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MEDICAL

The IMPACT Survey

The IMPACT Survey is a joint initiative between OIFE, OIF & Mereo BioPharma. The survey will be launched in summer 2021 and we will need the help of all our member organizations and the OI-community to spread the word and encourage as many people with OI (and parents) to fill in the survey.  Written by…

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