Registries was one of the main topics at OIFE AGM. Mr. George Reynolds (photo) gave a talk about the status on OI-registries in Europe and what will be needed in the future.

Patient registries represent a fundamental pillar upon which a number of critical activities are based to understand patient experiences and outcomes, as well as to advance care and treatments.

On June 25th EURORDIS hosted webinar where we could hear from experts Julian Isla (EURORDIS volunteer and Foundation 29), George Reynolds (RareUrn) and Luca Sangiorgi (ERN-Bond and Chair ERN research working group) about opportunities to create or become engaged in existing patient registries. You can watch the recording of the webinar here.