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The Awakening of Rare Diseases in Latin America

In order to highlight the importance of early diagnosis and treatment of rare diseases in Latin America and the policy challenges facing policymakers seeking to respond to this need, the Wilson Center and the Americas Health Foundation (AHF) convened an expert panel on August 9th at 10 am EST (9 am CST/11 am BRT) via Zoom.

Date & Time

Aug. 9, 2022
10:00am – 11:30am ET


Online Only


Rare diseases are primarily genetic disorders or medical conditions that individually afflict a small percentage of individuals but in aggregate affect about 350 million worldwide and about 40 to 50 million in Latin America. Across the Hemisphere, countries define rare disease based on different criteria. The lack of a unified definition, paired with limited public health policies to address rare disease needs and other challenges, obscures the standards for research, access to diagnosis, and management, which often do not meet patient needs. As a result, diagnosis may be elusive, and treatments can be practically and financially out-of-reach for many patients, particularly in countries where public health policies overlook rare diseases.

There are some 7,000 conditions generally recognized as rare diseases. Worldwide, these disorders affect about 350 million people, 40 to 50 million of whom reside in Latin America. Although increasing awareness of rare diseases has pushed several countries in the Americas to approve laws that ensure access to diagnosis and management for rare disease patients, many lack the resources and capacity to provide adequate care. Moreover, constraints on public health budgets generate pressure on health and finance ministries across the hemisphere in the context of spending on orphan drugs and other treatment options. As a result, public health officials are faced with difficult decisions as they seek to treat both rare and widespread diseases, which impact their populations. 

Key Takeaways

  • Written policies do not always translate to improved rare disease standards. The diagnostic odyssey remains expensive, time consuming, emotionally laborious. The lack of tangible policy implementation leaves patients and their caregivers at the wayside not only medically, but also socioeconomically. Expanding access to early diagnosis technology, improving medical education, and raising awareness of rare diseases can help realize codified standards.
  • Public health ministries face an ethical crossroads between equity and equality: one of the hardest obstacles for policymaking is deciding whether to give one child a million-dollar treatment or intervening with one dollar per capita for a million kids. Decisions on how to allocate limited funds must resonate with society, and to do so, the rare disease conversation must involve the public at large, not just patients and their caretakers.
  • Patient associations play a pivotal role in pushing forward rare disease policies, especially when collaborating with lobbyists, government officials, academics, and pharmaceutical companies. Still, there is room to professionalize advocacy further, largely by focusing the narrative more on evidence-based solutions inspired by peer countries’ experiences than on emotional and sympathetic appeals.

Hosted By

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 American Program

The Wilson Center’s prestigious Latin American 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 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 U.S. institutions in all sectors.  Read more

Maternal Health Initiative

Life and health are the most basic human rights, yet disparities between and within countries continue to grow. No single solution or institution can address the variety of health concerns the world faces. By leveraging, building on, and coordinating the Wilson Center’s strong regional and cross-cutting programming, the Maternal Health Initiative (MHI) promotes dialogue and understanding among practitioners, scholars, community leaders, and policymakers.  Read more

Science and Technology Innovation Program

The Science and Technology Innovation Program (STIP) brings foresight to the frontier. Our experts explore emerging technologies through vital conversations, making science policy accessible to everyone.  Read more

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