We are happy to say that OIFE’s general assembly, which took place on Zoom last night went well. We were 35 participants from 15 European and 3 associate member organizations – in total 17 countries. In addition four members of our advisory board took part and contributed to some of the topics. The voting members…
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 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…
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…
The OIFE Youth Event 2025 was organised by the OI Polish organization (Stowarzyszenie Osób Z Wrodzoną Łamliwoscią Kosci) who took care of delivering an amazing week-end full of unforgettable activities in Warsaw. SEPTEMBER 4TH This year was a bit different from others because we had a special bonus day for those who wanted to do…
OIFE’s AGM & 2025 Conference in Oslo: Unpredictable weather, false alarms and the missing pieces in the OI-puzzle The 2025 OIFE AGM and conference in Oslo focused on team building, mental health, youth engagement and knowledge gaps in OI-research. People with OI are used to preparing for the unpredictable, and there’s hardly anything more unpredictable…
Interview with Anna Rossi, newly resigned OIFE Board Member & Communication Manager. You have been a Board member of OIFE for more than 8 years Anna. And you have done a fantastic job as OIFE Communication Manager! Before you leave us for the Paralympics, we would like to ask you a couple of questions to…
You’ve been OIFE’s secretary for more than 20 years, despite not having OI yourself. How did you first become involved in OIFE? About 20 years ago my husband (who has OI) and I attended a meeting of the German OI association. There we met Ute Wallentin, the former OIFE president. She began to talk…
Written By Michael Stewart On November 15, 2024, the Osteogenesis Imperfecta Federation Europe (OIFE) hosted its third virtual European Investigator Meeting. This event brought together researchers, clinicians, patient representatives, and industry professionals from Europe and beyond, all dedicated to advancing osteogenesis imperfecta (OI) research. The meeting aimed to highlight new OI research, facilitate collaboration between…
