Narratives unveil knowledge and awareness-related issue, reinforcing patients’ self-identity in sickle cell disease
Our findings confirm that SCD represents a critical burden for patients and caregivers and indicate that lack of SCD knowledge may bolster the barriers to care, thus revealing the urgent need to enhance awareness to foster inclusion and quality of care.
Authors
- Alessandra Fiorencis (ORCID: https://orcid.org/0000-0001-9859-5070)
- Annalisa Scopinaro
- Alessandra Quota
- Giovanni Palazzi
- Donatella Venturelli
- Antonia Gigante
- Giovan Battista Ruffo (ORCID: https://orcid.org/0000-0003-0997-893X)
- Raffaele Vindigni
- Silvia Rita Vitale (ORCID: https://orcid.org/0000-0002-7948-3580)
- Valeria Maria Pinto (ORCID: https://orcid.org/0000-0002-8375-6289)
- Carla Galvani
- Jacopo Ceolan
- Giovanna Graziadei (ORCID: https://orcid.org/0000-0002-6801-5730)
- Raffaella Colombatti (ORCID: https://orcid.org/0000-0001-9797-0457)
- Francesca Begali
- De Franceschi L
- Gian Luca Forni
- Paola Chesi
- Simone Villaboni
- Antonietta Cappuccio
- Maria Giulia Marini
Institutions
- University of Verona (IT)
- University of Modena and Reggio Emilia (IT)
- Istituto Nazionale di Statistica (IT)
- Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico (IT)
- Foundation for Cardiovascular Biomedical Research and Gene and Cell Therapy (IT)
- Istituto Nazionale di Fisica Nucleare, Sezione di Ferrara (IT)
- Federazione Medico Sportiva Italiana (IT)
- Azienda di Rilievo Nazionale ed Alta Specializzazione (IT)
- Ospedale Policlinico San Martino (IT)
- Azienda Ospedale - Università Padova (IT)
- Azienda Ospedaliero Universitaria Policlinico "G.Rodolico - San Marco" (IT)
- Ospedale Civile di Vittorio Veneto (IT)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2026-02-19
- DOI
- https://doi.org/10.1186/s13023-026-04212-w
- Primary Topic
- Hemoglobinopathies and Related Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.00