From May 28-29 the the different clinicians and patient representatives from European Reference Network on Rare Bone Diseases (ERN BOND) were meeting in Oslo at their annual meeting. OIFE was represented by Rebecca T. Skarberg (ERN BOND epag) on site and Ingunn Westerheim, who took part online. Topics covered were joint replacement in OI and…
OIFE believes that all research projects affecting OI directly, should have some kind of patient involvement. The purpose is to ensure that our needs, concerns and expectations are properly addressed and considered in different phases of a project. Individual people with OI can be represented by persons from the “patient community”, which covers individual patients,…
The 2nd Remedi4All multi-stakeholder meeting “Ensuring patient centricity in Osteogenesis imperfecta research” has taken place in Bologna on 13th June 2024. OIFE was represented by several representatives of the OI Community giving examples and highlighting the importance of patient engagement and patient centricity in OI research, design and follow up of clinical trials, treatments and…
We are excited to announce that EURORDS are taking applications for the School on Medicines Research & Development and the School on Scientific Innovation & Translational Research. Both schools will take place in-person on 3-7 June 2024 in Barcelona! Would you like to join? Applications will close on 27 October 2023. Are you wondering why empowering patient…
The EURORDIS Open Academy School on Medicines Research & Development (Summer School) aims to provide rare disease patient advocates with the knowledge and skills needed to become experts in medicines research and development. Since 2015, researchers are also welcome to attend the School. Also this year people connected to OIFE were attending EURORDIS Summer School…
Rare Disease Week (RDW) is a brand new week-long series of events organized by EURORDIS which started February 22nd 2021. It included many webinars that targeted on rare disease patient advocates. The goal was to empower them with knowledge and skills so they can effectively participate in advocative activities at a European level and influence…
The European Patient Forum is happy to share with you an exciting opportunity for the 3rd edition of the Summer Training for Young Patients Advocates. The theme of 2019 is ‘Shaping the Future of Patient Advocacy’. Over the course of four days, young people will be expanding their skills and maximize their leadership potential. The…
