OIFE advocates for patient involvement in all clinical trials and research for Osteogenesis Imperfecta (OI) and other rare diseases. Advanced Therapy Medicinal Products (ATMPs) are innovative medicines for human use based on genes, cells, or tissues. This includes stem cells, that are currently being researched for OI. EURORDIS hosted two webinars about the topic: Webinar…
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 was represented by Alessandra Tolaccia at the webinar about patient involvement in ATMP, which means Advanced Therapy Medicinal Products, which are innovative medicines for human use based on genes, cells, or tissues. This includes stem cells, that are currently being researched for OI. The first webinar in this series brought together patients, researchers and…
On 4 March, our board member Malene represented the OIFE at a meeting on how patient organisations can effectively comment on the Union list of Critical Medicines, to make their voices heard and strengthen access to essential treatments. The webinar presented advice and practical experiences on the process of consultations and ensuring continued availability of…
EURORDIS has created a new survey that aims to gather data on mental health and quality of life from people with rare conditions like OI. It includes questions on how people cope with daily stress, which support they can rely on, or how they manage to study, work, and contribute to their community while living…
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…
At the OIFE 2025 conference we had the pleasure of having Matt Bolz-Johnson from EURORDIS present as a speaker. And honestly we could not ask for a better contributor at our 2025 conference in Oslo! Matt Bolz-Johnson reminded us about the importance of including mental health in our advocacy for better care and services. He…
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,…
EURORDIS Membership Meeting (EMM) brought together leading rare disease advocates from across Europe. For the first time, the biennial event was held in Riga – a city whose history of resilience and civic action offered a fitting backdrop for discussions on strengthening the voice of the rare disease movement. Across two days of workshops, strategy…
