Considering the success of the SCD patients' session at ASCAT 2019 it has been decided to repeat the experience by organizing another educational event online addressed to SCD patients in the framework of the 15th Annual Sickle Cell and Thalassaemia Conference (ASCAT).
The SCD Patients Educational Session involves three major sessions:
A duo made by a physician and a patient representative has moderated each topic session. Their role has been presenting the topic, gathering key messages, and collecting questions raised by hearers in the platform's chat. For some topics, pre-recorded sessions made by patients' testimonies have been shared (all of them available on ERN-EuroBloodNet's Youtube channel).
To better shape the framework of each specific session, the ERN-EuroBloodNet Coordination Team has collected questions from patients to physicians and from physicians to patients launching a survey among participants, and key messages belonging to each session before the official day of the Educational SCD session at ASCAT.
48 people living with SCD (patients and parents patients) and 20 health professionals (physicians, EURORDIS, ERN, others) registered to the event.
The Educational Online Session has been fully recorded. Those videos are available on the YouTube Educational channel, ERN-EuroBloodNet's EDU YouTube channel
Patients organizations that registered to the ASCAT 2020: