The ERN-EuroBloodNet has organized with the ASCAT (Annually Academy for Sickle Cell and Thalassemia Conference) Steering Committee and the Lancet SCD Commission a Global Survey for people living with Sickle Cell Disease.
This survey is distributed worldwide among people living with SCD (patients, parents of patients, caregivers, partners, and siblings) aiming to:
- prioritize the actions to be overtaken for improving the outcomes of Sickle Cell Disease
- hear from people living with Sickle Cell Disease about other unmet aspects to be considered and not tackled by the strategy displayed in the survey
The elements identified in the survey are a summary of the multi-annual work done by the ERN-EuroBloodNet, ASCAT, and the Lancet SCD Commission hearing from people living with SCD and identifying burdens and needs related to this complex and rare hematological condition.
This survey will be closed on the 18th of October 2023. You can contribute by clicking on this link: https://ec.europa.eu/eusurvey/runner/SurveyToPatients_Caregivers_onSCDglobalStrategy2023
