From Oxford to RUB in Bochum!

We are delighted to welcome Sophie from LUMC Leiden, Netherlands, to our Center for Rare Diseases this week. Sophie is assisting with the Eurreb Core Registry for rare diseases, including the modules for FibrousDysplasia, Achondroplasia and OsteogenesisImperfecta. Across Europe the relevance of Registries for research, development of new therapies and improving patient pathways has been recognized. The European registries for Rare Bone and Mineral conditions (EuRRBone) and Rare Endocrine Conditions (EuRRECA) are coordinated by Professor Appelmans team in Leiden.

Due to the rarity of these diseases and the limited number of affected individuals, registries are often the only tool, that allow for the collection of high-quality and structured patient-related data. Cross-border patient care and team efforts are needed like Sophie’s visit and support!