ERN-EuroBloodNet SCD Patients Educational Session at ASCAT 2023 October

ERN-EuroBloodNet SCD Patients Educational Session at ASCAT 2023 October

Online close session - focus on transition

1. Discrepancies between adult and teenagers in perceiving the diseases - using PROMs
2. Adult patients mentoring teenagers patients

Onsite

1. Global strategy for improving SCD outcomes globally, with the SCD Lancet Commission and from patients' point of view in the plenary of the ASCAT. Education, Research, and Policy are the selected key actions.
2. What is Artificial Intelligence and how it is used for SCD?
3. Exploring patient-doctor dynamics to understand how to build assertiveness with the help of two actors personifying running situations for SCD as entering at the urgency or asking for changing painkillers treatment plan.

The results of the first two years' editions have been published in one article entitled: "Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience" published in 2023 by the Orphanet Journal of Rare Diseases.