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.

Now you can register for free for a EURORDIS webinar taking place 25 June at 13.00 CEST to 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:

Click here to register:
https://zoom.us/webinar/register/WN_9n-uzzvsSmuc4I_dV_ZmnQ