Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience

Pellégrini, M; Chakravorty, Subarna; Del Mar Mañú Pereira, María; Gulbis, Béatrice; Gilmour-Hamilton, Catriona; Hayes, Sandy; de Montalembert, Mariane; Inusa, Baba; Colombatti, Raffaella; Roy, Noémi

doi:10.1186/s13023-023-02951-8

Public

Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience

Published in Orphanet Journal of Rare Diseases • Nov 1, 2023

Authors:

M Pellégrini

Subarna Chakravorty

María Del Mar Mañú Pereira

Abstract

BACKGROUND: Sickle cell disease (SCD) is an inherited chronic life-threatening disorder with increasing prevalence in Europe. People living with SCD in Europe mainly belong to vulnerable minorities, have a lower level of health education and suffer from isolation compared to those living with other ...

Subject

Patient Empowerment

Disease

Empowerment

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