Ukranian flag with the text Peace for Ukraine

War in Ukraine – how can you help?

There is a brutal war going on in one of OIFE’s member countries, and the last couple of days OIFE has received several questions from people who are concerned about the situation in Ukraine. Many are wondering if there is an OI-organization in Ukraine and how they can be of assistance to people with OI…

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OIFE

OIFE Leadership Meeting

On January 24th OIFE hosted its 2nd European Leadership meeting to inform our member organizations about news. More than 25 representatives from most of our European member organizations attended.  Topics included among others: Information about future events Status on the restructuring of OIFE and moving to Belgium (OIFE 2.0.) Status on the IMPACT survey News…

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Woman looking through microscopeADVOCACY

Accelerating Clinical Trials in the EU

The European Commission (EC), the Heads of Medicines Agencies (HMA) and the European Medicines Agency (EMA) have launched an initiative to transform how clinical trials are initiated, designed, and run. This initiative, accelerating Clinical Trials in the EU (ACT EU), aims to further develop the European Union as a focal point for clinical research, promote…

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Graphic showing bars and linesMEDICAL

Registry Research in Denmark

My name is Lars Folkestad. I am an associate professor and staff specialist at the department of endocrinology at Odense University Hospital. There I am part of the team that follows and cares for adults with OI. We are aiming towards a multi-disciplinary approach to our outpatient OI clinic visits, but most of our efforts…

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OIFE

Pain & OI Project started

On January 25th 2022 we organized the kick-off of the Pain & OI project, which is a collaboration between the OIFE and the Osteogenesis Imperfecta Foundation (USA) and a group of dedicated professionals who have experience on pain management, pain research and/or pain & OI. We had 21 participants from 10 different countries at the…

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ADVOCACY

EuRR-BONE needs your input

The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) needs input from people with OI and other rare bone conditions to finalize their questionnaires directed towards patients. What are the most relevant aspects for people with OI? Which topics can be disregarded? There is also a separate survey asking for input from professionals who…

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RESEARCH

Informal report from IntOI 2020+1

A summary by Lidiia Zhytnik, member of OIFE’s Medical Advisory Board On September 9, 2021 the IntOI 2020+1: Virtual International Meeting Early Stage Investigators Symposium, took place. It was organized by the OI Foundation and chaired by Dr. Joan Marini. The meeting highlighted OI research, performed by young investigators all over the world. The OIFE…

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MEDICAL

A Roadmap to Surgery in OI

Interview with Ralph J.B. Sakkers, MD, PhD, Paediatric Orthopaedic Surgeon, Department of Orthopaedic Surgery, University Medical Center Utrecht, The Netherlands & Simona Paveri and Leonardo Panzeri, Italian OI-association As.It.OI What was the purpose of the project “Roadmap to Surgery in OI”? Dr. Sakkers: Purpose of the project Roadmap to Surgery in OI was to create…

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STORIES

Artist and activist with OI: Benjamin Mejia

Interview with Benjamin Mejía, artist & activist from El Salvador Who are you and what is your relationship with OI? I am Benjamin Mejía, I am 28 years old and live in the City of San Salvador, Capital of the Republic of El Salvador, Central America; Currently I am a Fourth Year Student of the…

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