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…
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…
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…
On September 12, 2025 OIFE has been represented by Alessandra Tolaccia at the symposium organized by the European Registries for Rare Endocrine and Bone Conditions. Good opportunities to learn what is going on in the world of registries and to network with leading OI- and rare bone experts.
On September 11, OIFE was represented at the annual meeting of the European Reference Network on Rare Bone Diseases (ERN BOND) by our vice president Alessandra Tolaccia. Looking forwards to hear about ongoing activities and projects. The full programme can be downloaded here.
Join OIFE and other stakeholders at RareConversations: Advancing Rare Disease Healthcare! A live global forum bringing together rare disease advocates, experts, and patient voices to spotlight the economic and health system burden of rare diseases and explore how insights can drive meaningful change. The sessions will be on Tuesday, 23 Sept. 2025: Session 1: 07:00…
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…
Interview with Dr Jean-Pierre Chanoine, MDPhD, FRCPC (Academic), Clinical Professor, Endocrinology and Diabetes Unit British Columbia Children’s Hospital, President Global Pediatric Endocrinology and Diabetes (GPED), Vancouver, Canada Who are you and what is your relationship to OI? I am a paediatric endocrinologist with a longstanding interest in Osteogenesis Imperfecta (OI). I provide clinical care for…
For many across the rare disease community, not being understood can be as painful as the condition itself, impacting mental health and leaving people feeling invisible. This is why EURORDIS launched the EURORDIS Mental Health & Wellbeing Partnership Network. Both Alessandra Tolaccia and Rebecca T. Skarberg from OIFE have been part of the network. In…
