Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience has been published in the Orphanet Journal of Rare Diseases
The article analyses how the ERN-EuroBloodNet workshops with patients at annual ASCAT conferences have provided an opportunity to enhance patient experience and empowerment in SCD in Europe, producing benefits for patients, caregivers, patient associations and health professionals.
ERN-EuroBloodNet, Oxford Blood Group, Annual Sickle Cell Disease and Thalassaemia Conference, the European Hematology Association, and the British Society of Hematology have published in the Orphanet Journal of Rare Diseases the manuscript "Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience" as original article.
This manuscript presents the ERN-EuroBloodNet and ASCAT innovative patient-centered approach of embedding both research prioritization workshops and patient-driven education sessions within an international conference of SCD professional experts. This experience has produced evident benefits for patients, caregivers, patient associations, and health professionals.
In this manuscript, which includes a dedicated analysis of the SCD Prioritization Research Workshop in 2019 and of the online SCD patient education session in 2020, we report the methodology used for both projects, as well as the impact this has had on the scientific, medical, and patient communities.
The authors contributed to the manuscript: Mariangela Pellegrini (corresponding author) Subarna Chakravorty, María del Mar Mañú Pereira, Béatrice Gulbis, Catriona Gilmour-Hamilton, Sandy Hayes, Mariane de Montalembert, Baba Psalm Duniya Inusa, Raffaella Colombatti & Noémi BA Roy (RC and NR are co-last authors).
Link to the article: https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02951-8