December 15th OIFE was represented at a webinar organized by the European Joint Programme on Rare Diseases (EJP RD) together with several OI professionals. The webinar was about their new call focused on “Natural History Studies addressing unmet needs in Rare Diseases”. If you know about researchers who would be interested in collaborating on an…
On September 4th the Brittle Bone Society had their annual conference online. OIFE was represented by Ingunn Westerheim, who gave a talk together with Dr Laura Tosi and Tracy Hart from the Osteogenesis Imperfecta Foundation on how we can fill the many knowledge gaps we have in OI. The talk tried to explain how people…
In OIFE Magazine 2-2021 we published an interview with Brendan Lee, M.D. Ph.D., Baylor College of Medicine, Houston, Texas about OI-registries in the USA. In Europe we are developing the EuRR-Bone – which OI-registries do you have in the US? There is a contact registry with ca 2500 individuals signed up, which is sponsored by the…
Why do we need registries for OI? Several new drugs are being investigated for OI at the moment. If some of these end up on the market, it will be important to develop registries to monitor potential side effects and long term effects of these drugs. Registries are also important when it comes to learning…
