The Osteogenesis Imperfecta Foundation in the US recently announced the educational program OI TeleECHO Clinic Series. The goal is to build capacity to safely and effectively diagnose and treat osteogenesis imperfecta (OI). The program is a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes). This series uses Zoom videoconferencing, and will take place on…
Are you interested in research & policy work? As a European umbrella organization, we are more and more often asked to recruit patient representatives for research projects related to OI. This includes both clinical research and basic research. OIFE therefore needs to recruit and educate more people who can represent the voices of people with…
OIFE’s ordinary member organizations are European and our main activities are based in Europe. But we collaborate with OI-organizations around the world with the intention to exchange ideas, information and best practices in order to improve lives of people with OI. We have the great pleasure to announce that the Board of OIFE has voted…
Patient involvement in ERN BOND Patient involvement has been an important principle in the European Reference Network for Rare Bone Disorders (ERN BOND) all the way from the start. Patient representatives are included in both the steering committee and the working groups of the network. OIFE and other patient organizations are consulted when further advice…
EuRR-Bone Registry Did you know that there is a European registry on rare bone disorders being developed? It’s called EuRR-Bone and has received funding from the EU. OIFE has two patient representatives involved in the development of EuRR-Bone including the disease specific module on OI. Summer School on Rare Disease Registries To become more knowledgeable…
Can patient engagement foster access? On September 24th representatives from OIFE attended a very interesting webinar on pricing of rare disease drugs. It was called “How patient engagement can foster access through improved affordability” and included lectures from pharma companies, patient experts and health economists. The speakers raised a lot of important questions like: What…
The European Conference on Rare Diseases (ECRD) took place online from May 14th and 15th and ca 1500 people from 57 countries took part. Posters are now freely available at the ECRD webpage: https://www.rare-diseases.eu/posters/ Here you can read the impressions from some of the people who represented OIFE at the conference.
ICCBH Virtual Forum: “Bone Fragility Disorders in Children” Abstract submission for the ICCBH Virtual Forum on Bone Fragility Disorders in Children is now open. The scientific programme and other details can be viewed on the meeting website. Time & venue: November 18-20th 2020 ONLINE. Abstract deadline: 1 October 2020 Abstract submissions and clinical cases are invited.…
The OI Foundation is seeking abstract submissions from young investigators working in the field of osteogenesis imperfecta (OI) and/or rare bone disease research to be presented at the 2020 OIF Young Investigator Symposium. Time Tuesday, November 17 from 5pm-8pm EST (23.00 – 02.00 CET). Abstract deadline Abstracts are due by October 1. More information on…
