ERCAL, a regional initiative for rare diseases in Latin America and the Caribbean

Author:

Gonzaga-Jauregui ClaudiaORCID,Salazar Carlos,MacDonald Jennifer,Reichardt Juergen K.V.,Groft Stephen C.

Abstract

The importance of establishing programs to address the challenges of patients living with rare diseases has been recognized internationally, yet many countries, especially in low- and middle-income regions, are lagging in the recognition of the challenges and needs of patients and families. To improve this situation, the Enfermedades Raras en el Caribe y America Latina (ERCAL) initiative was established in 2020 with the vision of bringing together patients, patient representatives, organizations, researchers, clinicians, regulators, and all interested stakeholders in the rare diseases ecosystem under a common collaborative platform to sum efforts to improve the lives of patients and families living with rare diseases in the Latin American and the Caribbean region. Over the last three years, we have been working consistently to establish an agenda of priorities and objectives to guide the work of the initiative and address the major challenges faced by the rare disease community in the region.

Publisher

OAE Publishing Inc.

Reference12 articles.

1. Comisión Económica para América Latina y el Caribe (CEPAL). The world has 8 billion people, 662 million of whom live in Latin America and the Caribbean. Available from: https://www.cepal.org/en/news/world-has-8-billion-people-662-million-whom-live-latin-america-and-caribbean [Last accessed on 22 Feb 2024].

2. Orphan Drug Act of 1983. US Food and Drug Administration. Public law 97-414 -Jan. 4, 1983. Available from: https://www.govinfo.gov/content/pkg/STATUTE-96/pdf/STATUTE-96-Pg2049.pdf [Last accessed on 22 Feb 2024].

3. European Commission. Rare diseases. EU research on rare diseases. Available from: https://ec.europa.eu/info/research-and-innovation/research-area/health-research-and-innovation/rare-diseases_en [Last accessed on 22 Feb 2024].

4. Genomics of Rare Diseases

5. How many rare diseases are there?

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