ADVOCACY

OIFE IN THE EU PARLIAMENT

On February 8th a European Parliament event took place, hosted by Member of Parliament (MEP) Frédérique Ries and organised in collaboration with EURORDIS. The event was in the framework of Brussels Rare Disease Week 2023, to reflect on how the EU can ensure that more and better treatments are available, accessible and affordable for people…

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ADVOCACY

OIFE in Paris

From November 8-9 Ingunn and Renata attended the EURORDIS Council of Federations meeting in Paris. Inger-Margrethe S. Paulsen from NFOI also attended. Among the topics were access to treatments and the pharmaceutical legislation, information about Rare Disease Week and future funding options in research. There was also an update on the situation for people with…

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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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CONFERENCES

OIFE at RBD Summit

On December 6th three representatives from OIFE took part in the first edition of the Rare Bone Disease (RBD) Summit: Oliver Semler Ingunn Westerheim Inger-Margrethe Stavdal Paulsen On December 14th we will attend the second half of the two half-day multi-stakeholder meeting. The RBD (Rare Bone Disease) Summit is a global multi-stakeholder group meeting that aims to provide a platform…

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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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Logo Brittle Bone SocietyCONFERENCES

How to fill the knowledge gaps in OI

On September 4th the Brittle Bone Society had their annual conference online. OIFE was represented by Ingunn Westerheim, who gave a talk together with Dr Laura Tosi and Tracy Hart from the Osteogenesis Imperfecta Foundation on how we can fill the many knowledge gaps we have in OI. The talk tried to explain how people…

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CONFERENCES

OIF Investigator Meeting

Summary by Ingunn Westerheim, Dr Oliver Semler and Dr Lars Folkestad The OIF investigator Meeting is normally held in Chicago, but took place online on April 15th 2021. OIF Investigator Meeting The program chair this year was Dr Deborah Krakow who is Professor and Chair of the Department of Obstetrics and Gynecology at UCLA. This…

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CONFERENCES

Call for abstracts for IntOI 2020+1

IntOI 2020+1: Virtual International OI Meeting Early-Stage Investigator Symposium September 9, 2021 | 11:00am – 4:00pm EDT (GMT-04:00) Chaired by Dr. Joan Marini of the National Institutes of Health, this is an interim International OI meeting pending the return of in-person meetings, with the postponement of the International OI meeting to 2022. The presentation focus…

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