The Clinical Patient Management System platform aspires to accelerate diagnosis and treatment of rare diseases in the European framework European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe who aim to tackle complex or rare diseases and conditions. There are 24 ERNs involving 25 European countries and over 300 hospitals covering all…
One of OIFE’s goals is to represent our members on an international level and be the voice of people with OI and their families. One of our representatives is Rebecca T. Skarberg. She is the voice of people with OI in the European Reference Network for Rare Bone Disorders (ERN-BOND), who had their annual technical…
The European Patient Forum is happy to share with you an exciting opportunity for the 3rd edition of the Summer Training for Young Patients Advocates. The theme of 2019 is ‘Shaping the Future of Patient Advocacy’. Over the course of four days, young people will be expanding their skills and maximize their leadership potential. The…
On January 22nd 2019 OIFE was invited to the pharmaceutical company Mereo Biopharma in London to talk about OI from the perspective of people who have OI themselves. OIFE was represented by Honorary Member Taco van Welzenis, who also talked about how the OI-community is organized and what is important for us in research and…
February’s OIFE Magazine main topic is research and I could have called this editorial “The patients’ voice”. But to be honest, I’m not too fond of the term patients. Patients belong in hospitals. The OIFE represents people with OI and families, who most of the time live active and meaningful lives outside hospital walls. There…
