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,…
Have you seen that applications for the 2022 EURORDIS Summer School are open? OIFE have at least five people who attended Summer School before and who graduated as patient experts. Take your patient advocacy to the next level, and learn with EURORDIS – European Rare Diseases Organisation about an exciting range of topics – including…
Today OIFE is represented by vice-president Dace Liepina at the 28th EURORDIS Round Table of Companies Workshop in Barcelona – “A New PARADIGM of Meaningful Patient Engagement in the Life Cycle of Medicines”. The event is an annual seminar for representatives from industry (pharma) and from EURORDIS and their member organizations. This year, the workshop…
