Rare Diseases in Latin America: A Dialogue with Experts Event
Attendees:
Institutions:
- Heidi Bjornson representative of the Chan Zuckerberg Initiative (CZI)
- Stephen Groft, President of Rare Diseases of the Caribbean and Latin America (ERCAL)
- Richard Salvatierra President of the Americas Health Foundation (AHF)
Moderators:
- Felicitas Colombo Director of Public and Government Affairs of AHF
- Dr. Mariana Rico, Medical Director of AHF
Patient Associations:
- Luciana Escati Peñaloza, Argentinean Federation of Rare Diseases (FADEPOF).
- Antoine Daherm, Federação Brasileira das Associações de Doenças Raras (FEBRARARAS).
- Alejandro Andrade, Chilean Federation of Rare Diseases (FECHER).
- Diego Gil Cardoso, Colombian Federation of Rare Diseases (FECOER).
- Jesús Navarro, Mexican Organization for Rare Diseases (OMER).
Summary of the Event – Rare Diseases in Latin America: A Dialogue with Experts
There are more than seven thousand rare diseases in the world and most of them have a genetic cause. According to Orpha.net approximately 4% to 8% of the world’s population lives with a diagnosis of a rare disease, translating to 300 million people. This represents a significant group of people requiring specialized care in the provision of health services. In recent decades, there has been increased attention to efforts to stimulate research, development and access to medicines for rare diseases. Although there have been advances in public policy and regulatory frameworks, important reforms are still needed.
Currently, data on Rare Diseases in Latin America are scarce, the population of Latin America and the Caribbean according to the World Bank is 652,276,325 (650 million people). Based on this data, it is estimated that between 26 to 52 million people are living with a rare disease. Although progress has been seen, there are still regulatory, infrastructure, registration and public policy challenges, among others. The objective of the first roundtable was to 1) analyze the current landscape in Latin America, 2) assess the barriers and strengths in the region, and 3) propose recommendations to overcome these challenges.
It is important to identify the definitions of RD. According to the WHO, rare diseases are those that occur in less than 5 people per 10 thousand population. However, this definition varies from country to country. In the Latin American region, there is a wide range of classifications. For example, in Brazil, a disease is considered rare when it affects 65 or fewer inhabitants per 100,000. In Colombia, a disease is considered rare when it affects 1 in 5,000 individuals. Other countries such as Argentina, Chile, Mexico, Panama and Uruguay consider a disease to be rare when it affects 1 in 2,000 individuals.
Round Table 1
Panelists:
- Dr. Marisa Aizenberg (Argentina) – Academic Director of the Health Observatory at the U.B.A. Law School.
- Dr. Gustavo Mendes (Brazil) – General Director of Medicines and Biological Products at the National Health Surveillance Agency (ANVISA).
- Dr. Gabriela Repetto (Chile) – Director of the Rare Diseases Program at the Faculty of Medicine within Universidad del Desarrollo, Santiago de Chile.
- Dr. Germán Escobar Morales (Colombia) – Vice Minister of Health and Social Protection.
- Dr. Santiago March (Mexico) – Coordinator of Strategic Projects at FUNSALUD.
Round Table 2
Key points from the UN Resolution on Rare Diseases, published on December 16, 2021, in order to analyze the scope of its adoption in the Latin American region:
- The inclusion and participation in society of people living with a Rare Disease and their families.
- The guarantee of universal and equitable access to quality health services without financial hardship.
- The promotion of national strategies and actions.
- The integration of rare diseases into UN agencies, programs and priorities.
- Issuing periodic UN reports to monitor progress in the implementation of the resolution.
Panelists:
- Natalia Messina (Argentina) – Director of Specialty and High-Price Medicines at the National Ministry of Health.
- Melina Maia (Brazil) – Secretary of the Permanent Mission of Brazil to the United Nations.
- Manuel Espinoza (Chile) – Head of the Health Technology Assessment Unit of the Clinical Research Center of the Catholic University and Honorary Visiting Fellow of the Center for Health Economics at the University of York.
- Nubia Bautista (Colombia) – Deputy Director of Non-Communicable Diseases of the Ministry of Health and Social Protection.
- Tanya Palacios (Mexico) – Director of Genes Latinoamérica AC and belonging to the Judicial Power of the Federation in Mexico.
Recordings of the event:
Cenário Brasileiro de Das Doenças Raras No Brasil
About the congress
Created with the aim of publicizing the theme and provoking enriching discussions, the Rare Disease Scenario has mobilized an increasing number of people. Annually, patients, family members, associations, academics, the pharmaceutical industry and regulatory bodies are invited to the same table.
Plural and democratic, the event symbolically represents Casa Hunter’s belief in dialogue as one of the most effective ways of dealing with the issue of rare diseases, already known for its complexity.
More than 1,900 people registered to participate in the event (online and in person) and about 500 printed stars at the Stage, or Theater of the World Trade Center (WTC), in São Paulo.
The online platform registered 9226 visualizations – 7121 in Portuguese, 1071 in English and 1036 in Spanish, registering the internationalization of the event. In addition, the stage is outlined with simultaneous translation.
Photos:
Link of the event and the Institutional sponsors:
Event 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.
Regional Meeting
Rare Disease’s Patient Groups in Latin America
Sao Paulo, August 18th, 2022
The event Regional Meeting Rare Disease Patient Groups in Latin America was organized by “Enfermedades Raras en el Caribe y América Latina” (ERCAL) in collaboration with Illumina, CZI and the Americas Health Foundation (AHF). The event took place on August 18, 2022 in Sao Paulo, Brazil. It was supported by several patient association groups from across the region, including Alianza Dominicana de Asociaciones de pacientes (ADAPA), aYOUdas Panama, Enfermedades Raras Costa Rica, Federação Brasileira das Associações de Doenças Raras (FEBRARARAS), Federación Chilena de Enfermedades Raras (FECHER), Federación Colombiana de Enfermedades Raras (FECOER), Federación Peruana de Enfermedades Raras (FEPER) and Organización Mexicana de Enfermedades Raras (OMER) (via Zoom).
Venue: Machado de Assis Auditorium, Gran Estanplaza Berrini
Participants:
- Federação Brasileira das Associações de Doenças Raras (FEBRARARAS) – Ariadne G. Dias, Director.
- Federación Chilena de Enfermedades Raras (FECHER) – Alejandro Andrade, President.
- Enfermedades Raras Costa Rica – Francini Romero, Association Leader.
- Federación Colombiana de Enfermedades Raras (FECOER) – Diego Fernando Gil Cardozo, Executive Director.
- aYOUdas Panama – Vanessa Valencia, Social Work for aYOUdas Panama.
- Federación Peruana de Enfermedades Raras (FEPER) – María Elena Almendáriz Veiga, Executive Director.
- Alianza Dominicana de Asociaciones de pacientes (ADAPA) – Roberto Rodriguez, Vice President.
- Organización Mexicana de Enfermedades Raras (OMER) – Jesús Navarro, President (via Zoom).
