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Infographic | Rare Diseases in the Americas

Itzel Monserrat Vargas Márquez

In this infographic, Monse Vargas explores how Latin American countries have addressed rare disease policymaking to highlight the benefits that regional cooperation on the matter could bring. 

Rare Diseases in the Americas  

Rare diseases (RDs) comprise a variety of medical disorders, each of which affects a small number of people, but collectively afflict millions. In Latin America, around 7% of the population – some 40 to 50 million people – lives with a rare disease. Rare diseases pose a major yet often under-addressed public health challenge for Latin American countries. Given the rarity of these conditions, diagnoses, treatments, and medications are costly. Therefore, approving and implementing rare disease policies raises significant challenges for health and finance officials seeking to optimize limited budgets for unlimited public health needs.

Some countries in the region define RDs following the European Union’s criteria (a prevalence of less than one case for every 2,000 people); others have unique definitions based on specific prevalence rates; and some have yet to define rare diseases in their legal codes. The lack of standardization in the region is not only evident in the varying definitions, but also in different healthcare polices, newborn screening practices, and patient registries. Due to the complex nature of RDs, cooperation between countries is key to expediting diagnoses and improving patient care. Furthermore, since two out of every three older people with disabilities receive all their care from family members, the social, emotional, and financial impact on caregivers is usually high and often forgotten.

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About the Author

Itzel Monserrat Vargas Márquez

Itzel Monserrat Vargas Márquez

Intern, Mexico Institute
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Mexico Institute

The Mexico Institute seeks to improve understanding, communication, and cooperation between Mexico and the United States by promoting original research, encouraging public discussion, and proposing policy options for enhancing the bilateral relationship. A binational Advisory Board, chaired by Luis Téllez and Earl Anthony Wayne, oversees the work of the Mexico Institute.   Read more

Latin America Program

The Wilson Center’s prestigious Latin America Program provides non-partisan expertise to a broad community of decision makers in the United States and Latin America on critical policy issues facing the Hemisphere. The Program provides insightful and actionable research for policymakers, private sector leaders, journalists, and public intellectuals in the United States and Latin America. To bridge the gap between scholarship and policy action, it fosters new inquiry, sponsors high-level public and private meetings among multiple stakeholders, and explores policy options to improve outcomes for citizens throughout the Americas. Drawing on the Wilson Center’s strength as the nation’s key non-partisan policy forum, the Program serves as a trusted source of analysis and a vital point of contact between the worlds of scholarship and action.  Read more

Brazil Institute

The Brazil Institute—the only country-specific policy institution focused on Brazil in Washington—works to foster understanding of Brazil’s complex reality and to support more consequential relations between Brazilian and US institutions in all sectors. The Brazil Institute plays this role by producing independent research and programs that bridge the gap between scholarship and policy, and by serving as a crossroads for leading policymakers, scholars and private sector representatives who are committed to addressing Brazil’s challenges and opportunities.  Read more