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…
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…
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…
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…
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…
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…
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…
Ingunn Westerheim and Rebecca Tvedt Skarberg from Norway are the recipients of this year’s Black Pearl Volunteer Awards, an international award that recognizes their volunteer efforts for people with the rare condition osteogenesis imperfecta (OI). How it all started We do the interview on Zoom, since both ladies are at risk for Covid19. But what…
Patient involvement in ERN BOND Patient involvement has been an important principle in the European Reference Network for Rare Bone Disorders (ERN BOND) all the way from the start. Patient representatives are included in both the steering committee and the working groups of the network. OIFE and other patient organizations are consulted when further advice…
