As the co-chair of the steering committee, Ingunn Westerheim encourage you to join the growing EuRREB (European Registries for Rare Endocrine and Bone Conditions) network and contribute to advancing knowledge and care for patients with rare endocrine and bone conditions. By becoming a participating centre, you can contribute valuable clinical data, collaborate with an international…
Dr. Behnam Javanmardi and colleagues at the University Hospitals Bonn and Magdeburg are developing Bone2Gene, an artificial intelligence project that aims to support the diagnosis and monitoring of rare bone diseases. There are more than 700 known rare bone diseases, involving more than 500 different genes. For many families, receiving a precise diagnosis can take…
We’re inviting women with osteogenesis imperfecta (OI), age 35 and older, to take part in a new survey focused on menopause and OI. This project is part of the OIF Adult Health Initiative and is being conducted through The Global Adult OI Initiative, an international collaboration of OI clinicians, researchers, and patient advocacy partners, including contributors…
Are you a clinician taking care of adult patients with Osteogenesis Imperfecta? Treatment initiation in adults with OI varies between centers and countries. A survey aimed at OI-professionals has been created to map current practice, identify unmet needs and support future consensus. The survey is an initiative from the European Calcified Tissue Society (ECTS) Rare…
From April 22-23 Alessandra Tolaccia represented OIFE at the first Multi-Stakeholder Meeting (MSM) organised by RealiseD dedicated to exploring “Rare and Ultra-Rare Disease Patient Enrolment in Clinical Trials”. The event was designed as a forum to reflect on, validate, and further develop the #RealiseD enrollment model, by bringing together perspectives from across the rare and…
Written by Dimitra Micha, member OIFE Scientific Advisory Board The 26th annual OIF Scientific Meeting in Chicago (April 22-24 2026) welcomes key OI developments from US and Canada scientists and clinicians working on improving health conditions for people with OI. Attendance of more than 100 OI professionals ensures adequate representation of scientific outcomes and clinical…
Written by Lidiia Zhytnik, member of OIFE’s Scientific Advisory Board From 24-27 April, the 53rd European Calcified Tissue Society (ECTS) Congress brought together clinicians and researchers working in bone and related conditions. Around 700 participants from Europe and beyond attended. The Osteogenesis Imperfecta Federation Europe (OIFE) was invited to the congress and represented by advisory…
Interview with Adalbert Raimann, MD, PhD and Gabriel Mindler, MD Gabriel and I are pediatric bone specialists based in Vienna. Most of our working days are spent with children and adults who live with Osteogenesis imperfecta or other rare bone conditions. Over time, many of our patients have come not only from Austria, but also from…
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…
