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…
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…
Demystifying Clinical Trials: how they work and why they matter/ Patient Empowerment through education Are you a patient or a caregiver? Ever wonder how new medical treatments reach patients? This webinar is designed specifically for patients and caregivers who want to understand the science and decisions behind their care and become an active part in…
From 3rd – 4th OIFE was represented by Alessandra Tolaccia at the European Conference on Rare Diseases & Orphan Products (ECRD) in Prague. ECRD2026 opened with a clear message: Europe has the knowledge, the momentum and the community needed to act. Now it needs coordination, political will and implementation. Held under the theme Rare Diseases…
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…
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…
From May 12-13 OIFE was represented by Alessandra Tolaccia at the iDR26 – the International Drug Repurposing Conference 2026 in Brussels. The conference was an inspiring gathering of researchers, clinicians, patient advocates, and industry leaders organized by the project REMEDi4ALL. From AI-driven discovery to patient-led innovation, the energy around faster, more accessible treatments is real. Beyond…
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…
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…
