Identification of strengths and weaknesses of the healthcare system for persons living with rare diseases in Catalonia (Spain), and recommendations to improve its comprehensive attention: the “acERca las enfermedades raras” project
Catalonia has established a unique healthcare model for RDs in Spain, with clear strengths and advantages. However, after analyzing them, the experts suggested that new governmental political and administrative decisions are needed to ensure the efficient implementation of a healthcare plan for PLWRD in Catalonia, which could be applied to other regions and nations worldwide.
Authors
- A. Ricart (ORCID: https://orcid.org/0000-0001-7697-8572)
- Fernando Martínez‐Valle (ORCID: https://orcid.org/0000-0003-2673-2034)
- Jordi Cruz (ORCID: https://orcid.org/0000-0001-8191-8689)
- Jordi Antón (ORCID: https://orcid.org/0000-0002-8792-4219)
- Cristina Mallol (ORCID: https://orcid.org/0000-0002-2920-9612)
- Ariadna Tigri-Santiña (ORCID: https://orcid.org/0000-0003-2765-0065)
- Gonzalo Calvo (ORCID: https://orcid.org/0000-0001-8860-6653)
- Rita Reig‐Viader (ORCID: https://orcid.org/0000-0002-6893-6177)
- José Hernández‐Rodríguez (ORCID: https://orcid.org/0000-0002-2357-2015)
- Albert Salazar (ORCID: https://orcid.org/0000-0003-2385-0561)
- José Mateo (ORCID: https://orcid.org/0000-0002-4227-3256)
- Xènia Acebes (ORCID: https://orcid.org/0000-0001-6449-938X)
- M. A. Mangues (ORCID: https://orcid.org/0000-0002-1438-8515)
- Francesc Palau (ORCID: https://orcid.org/0000-0002-8635-5421)
- Josefa Rivera
- Ruth de Francisco
- Carmen Alerany
- Marian Corral
Institutions
- Hospital Sant Joan de Déu Barcelona (ES)
- Generalitat de Catalunya (ES)
- Instituto de Salud Carlos III (ES)
- Hospital de Sant Pau (ES)
- Ministry of Health (ES)
- Centre for Biomedical Network Research on Rare Diseases (ES)
- Centro de Investigación Biomédica en Red (ES)
- Hospital Clínic de Barcelona (ES)
- Federación Española de Enfermedades Raras (ES)
- Vall d'Hebron Hospital Universitari (ES)
- Consorci Institut D'Investigacions Biomediques August Pi I Sunyer (ES)
- Instituto de Investigación de Enfermedades Raras (ES)
- Deleted Institution
- Universitat de Barcelona (ES)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-01-29
- DOI
- https://doi.org/10.1186/s13023-024-03518-x
- Primary Topic
- Genomics and Rare Diseases
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Generalitat de Catalunya
- Swedish Orphan Biovitrum