ENROL WEBINARS is a European online educational program targeting patients organized by the ERN-EuroBloodNet in the framework of the ENROL, the European Rare Blood Disorders Platform.

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.  

PROGRAM

• Three sessions, from 5 pm to 6:30 pm (CET), starting from February 2023.
• 40 min of presentation and Questions from the public at the end of the presentations
• On Zoom
• Program will be recorded and part of the ERN-EuroBloodNet Edu YouTube channel

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.

SESSIONS

• ENROL: Networking on European Registries in Rare Hematological Disorders

        Date: 15^th 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)

• How ENROL Supports Clinical Research

        Date: 22^nd 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)

• PROMs and PREMs in ENROL

        Date: 1^st 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)).

Important! Webinars are recorded are publicly available through ERN-EuroBloodNet website and social media channels. By joining the webinar you accept the possibility of being recorded and understand that will be publicly available on the website and social media channels. For more information, you can check the Privacy Policy.