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Page 6 of 7 Gonzaga-Jauregui et al. Rare Dis Orphan Drugs J 2024;3:6 https://dx.doi.org/10.20517/rdodj.2023.48

Given the broad intended reach of ERCAL/CEPCAL, we have established a website (https://www.cepcal.
org/) and maintain our presence in social media through different channels to reach diverse audiences
relevant to the objectives of the collaborative, from patients and patient organizations (Facebook, Instagram,
and Threads: CEPCAL_LATAM) to professionals working on RDs in the region (LinkedIn) and a broader
audience interested in RDs (Twitter/X: @CEPCAL_LATAM). As the vast majority of informational,
educational, and outreach materials are primarily available in the English language and this is not a native
language for most patients and people living in the LAC region, one of the primary objectives of CEPCAL is
to increase awareness and education through the production of reliable materials in the languages of people
in the region. Through our social media channels, we have started distributing informational and
educational materials in Spanish, Portuguese, and English with the intent of increasing the number of
resources available to patients and professionals in the three main languages in the region. Similarly, videos
and webinars produced by ERCAL/CEPCAL and allied organizations are being deposited on our YouTube
channel (https://www.youtube.com/@CEPCAL_LATAM).

A major interest of CEPCAL is to break barriers and improve the quality of life for all patients living with
RDs across the region. It is estimated that Latin America is home to approximately 50 million indigenous
people, of which 3 to 4 million are calculated to live with a rare disorder. The majority of indigenous
peoples are underserved in healthcare, social, and educational services. An important planned project for
CEPCAL is also to translate and produce educational and informational materials about rare and low-
prevalence diseases in some of the major indigenous languages spoken in the region to help bridge the
informational gap and reduce stigma about these conditions in populations that do not speak the three
major languages of the region, empowering patients and families from these populations.

As we continue growing the CEPCAL network and advance towards accomplishing the objectives of the
different Working Groups, we invite everyone involved in rare diseases in LAC to join this Collaborative
and work together to amplify the efforts and voices of patients, organizations, researchers, clinicians, and all
stakeholders to improve the quality of life of patients living with rare and low-prevalence diseases in the
region. We are optimistic that the noble cause of improving the lives of people living with rare diseases in
Latin America and the Caribbean can be advanced; CEPCAL is prepared to play its part continent-wide.

DECLARATIONS
Acknowledgments
The authors thank current members and allied organizations for their work and ongoing support of the
former ERCAL initiative and the CEPCAL collaborative. The authors thank the Chan Zuckerberg Initiative
for financial support for ERCAL activities in 2021-2022.

Authors’ contributions
Made substantial contributions to the conception and writing of the original manuscript: Gonzaga-Jauregui
C, Reichardt JKV, Groft SC
Provided insightful comments, edited and revised the manuscript: Gonzaga-Jauregui C, Salazar C,
MacDonald J, Reichardt JKV, Groft SC

Availability of data and materials
Not applicable.