The program,co-designed by ENROL's consortium, ERN-EuroBloodNet ePAGs and EURORDIS as part of the ENROL Steering Committee, consists of three Webinars focused on different aspects of the European Registries on Rare Haematological Disorders: a general overview on ENROL, its structuration, policy and adherence to European Rare Diseases, how this platform supports clinical research and finally the benefits of associating PROMs and PREMs to registries.
ERN-EuroBloodNet webinars are conducted using the Zoom Platform. It allows full audio and visual communication, as well as the interaction between webinar's speaker and participants. Each webinar will last one hour and 30 minutes including speakers' presentations and Questions & Answers session from the hearers.
Each session is moderated by a duo of an expert physician or researcher and a ePAGs, who elaborates the session together in an interactive way. The patient representative ensures that information provided can be well addressed to patients community, and also highlights which are the key crucial concepts for patients to the expert and asking to clarify them to the webinar audience.
Date: 15th of February 2023
Speaker: Dr. María del Mar Mañú Pereira (ERN-EuroBloodNet Scientific Director & ENROL Coordinator, University Hospital Vall d'Hebron) and Loris Brunetta (Thalassaemia International Federation)
Date: 22nd of February 2023
Speaker: Prof. Dr. Béatrice Gulbis (ERN-EuroBloodNet co-Coordinator, Hôpital ERASME-CUB, LHUB-ULB, Brussels) and Maria Piggin (PNH Support and PNH Global Alliance)
Date: 1st of March 2023
Speakers: Dr Mariangela Pellegrini (Educational & Patients Program Manager, Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis) and Jacqueline Dubow (MDS Alliance (international) & Connaître et Combattre les Myélodisplasies (CCM)).