The EURORDIS Open Academy accompanies patient advocates by offering rare disease-specific comprehensive training programmes that empower advocates with the knowledge, skills and confidence they need to engage with different stakeholders as equal partners. Their schools, supported by ERDERA, offer a blended learning approach that includes e-learning courses, webinars, in-person training, as well as research visits and networking…
OIFE has a number of people who have graduated from the Open Academy courses in Barcelona, organized by EURORDIS-Rare Diseases Europe. Applications are now open for the 2026 editions of the Open Academy School on Medicines Research & Development and the Open Academy School on Scientific Innovation & Translational Research! The event will take place…
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 year 2024 is history – and it will be a year to remember with pride for the OIFE. Thanks to a growing number of dedicated volunteers, we were represented in many different conferences and events during the year – both face to face and online. We co-hosted the big Remedi4All conference in Bologna in…
New record! This year OIFE members had 4 participants at Open Academy Medicines Research and Development School and Scientific Innovation & Translational Research School: Inger-Margrethe (Norway), Penny (UK) and Alessandra and Leonardo (both from Italy). The course took place in Barcelona and the two courses ran in parallel from Monday to Wednesday (June 3-7, 2024).…
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…
OIFE is a member of the rare disease umbrella organization EURORDIS. At least four of OIFE’s patient representatives have graduated from EURORDIS Summer School, but we are always interested in recruiting more patient experts. Through the Open Academy capacity-building programmes, EURORDIS empowers patient advocates to have the confidence and knowledge needed to bring their expertise…
