2do Congreso de Enfermedades Raras
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2do Congreso de Enfermedades Raras
The second edition of the Rare Disease Congress for Latin America and the Caribbean promises to be a dynamic and enriching space, where collaboration and commitment will be key to advancing the improvement of care and treatment of rare diseases in the region.
*Agenda subject to change
Registration
Opening and Welcome
Dick Salvatierra, President of Americas Health Foundation (AHF) (USA)
Dr. Ignacio Zarante, Director of the Institute of Human Genetics of the Javeriana University (Colombia)
Diego Gil, President of Rare Diseases in the Caribbean and Latin America (ERCAL) and Executive Director of the Colombian Federation of Rare Diseases (FECOER) (Colombia)
Dr. Jaime UrregoVice Minister of Public Health (Colombia)
2023 Congress Recap
Regional Landscape 2023-2024
Diego Gil, President of Rare Diseases in the Caribbean and Latin America (ERCAL) and Executive Director of the Colombian Federation of Rare Diseases (FECOER) (Colombia)
Shaping Future Policies for Rare Diseases (RD) in Latin America
Carolina Goic (virtual), Former Senator, Academic at the School of Medicine of the Pontifical Catholic University of Chile and Executive Director of the Center for Cancer Prevention and Control (Chile)
Dr. Jaime Urrego, Vice Minister of Public Health (Colombia)
Alejandro Andrade, President of the Chilean Federation of Rare Diseases (FECHER) (Chile)
Andrés Forero, Member of the House of Representatives of Colombia (Colombia)
Pamela Llantén (virtual), Oficina Nacional de Condiciones Crónicas Complejas y Enfermedades Poco Frecuentes (Chile)
Coffee break
Patient Registries and Clinical Studies: Unlocking Opportunities and Overcoming Challenges
Durhane Wong-Rieger (virtual), President of Rare Diseases International (RDI) and President of the Canadian Organization for Rare Diseases (CORD) (Canada)
Dr. Ignacio Zarante, Director of the Institute of Human Genetics of the Javeriana University (Colombia)
Dr. Mauricio Orozco, Chief of the Pneumology Service of the Cardiovascular Foundation of Colombia (Colombia)
Dra. Martha Lucía Ospina, Executive President of the Mayor Méderi University Hospital
Dr. Roberto Giugliani, Professor of Genetics at Federal University of Rio Grande do Sul, Director of Casa dos Raros (Brazil)
Dra. Michelle Jiménez, Patient Registration Coordinator (Dominican Republic)
Proactive Approaches to Prevention and Early Diagnosis
Dra. Andrea Rojas, Executive Director of the Costa Rican Association for Screening and Prevention of Disabilities in Children (ASTA) (Costa Rica)
Dr. Carlos Javier Alméciga, Professor and Director of the Institute of Inborn Errors of Metabolism of the Pontificia Universidad Javeriana (Colombia)
Dr. Cesar Paz y Miño, Researcher in Medical Genetics, Faculty of Health Sciences, Universidad UTE (Ecuador)
Dra. Tania Bachega, President of the Brazilian Society of Neonatal Screening and Inborn Errors of Metabolism (Brazil)
Dr. Alejandro Gaviño, President of the Mexican Association of Genetics (Mexico)
Dra. Gioconda Manassero, President of the Genetics Society, Director of the Genetics Area of the San Borja National Children's Institute (Peru)
Best Practices and Methodologies for Health Technology Assessment for RD
Dr. Jaime Espín (virtual), Professor at the Andalusian School of Public Health (EASP) (Spain)
Verónica López Gousset, Executive Committee of the Rare Diseases Interest Group HTAi (Colombia)
Dra. Adriana Robayo, Executive Director of the IETS (Colombia)
Dr. Manuel Donato (virtual), Executive Director of the National Commission for the Evaluation of Health Technologies and Clinical Excellence of the Ministry of Health (Argentina)
Dr. Héctor Castro, Executive Director of Health-R LLC (Colombia)
Dra. Alejandra Camacho, President of the
Mexican Genetics Council (Mexico)
The Health Economics of RDs: Pathways to Integration
Dra. Margarita Restrepo, Regional Director of Market Access in Latin America at MSD (Colombia)
Dr. Diego Rosselli, Associate Professor of Health Economics at Pontificia Universidad Javeriana (Colombia)
Jorge Ernesto García, Member of ISPOR (Colombia)
Luis Alberto Soler, Subdirector de Gestión de Riesgo Cuenta de Alto Costo (Colombia)
Dr. Gustavo Gaye, Honorary member of the National Resources Fund and advisor to the Minister and the Undersecretary of the Ministry of Health (Uruguay)
Andreia Bessa, Federação Brasileira das Associações de Doenças Raras (FEBRARARAS) (Brasil)
Coffee break
Innovative Financing Strategies for RD
Dra. Verónica Cazar Ruíz, Former President of the National Council for the Setting and Review of Drug Prices, Ministry of Public Health and General Technical Coordinator of Certifications ARCSA (Ecuador)
Dr. Héctor Castro, Executive Director of Health-R LLC (Colombia)
Dr. Gustavo Gaye, Honorary member of the National Resources Fund and advisor to the Minister and the Undersecretary of the Ministry of Health (Uruguay)
Adriana Méndez, General manager at Takeda (Colombia)
Dr. Leonardo Arregoces, Former Director of Medicines and Health Technology of the Ministry of Health and Social Protection of Colombia. Consultant for the World Bank (Colombia)
The experience of patient organizations in Latin America and the Caribbean
- Representatives from ERCAL patient organizations will share their experiences, challenges, and successes in supporting people with RD in Latin America and the Caribbean.
Denise Vallejo, President of Alianza Dominicana de Asociaciones de Pacientes (ADAPA) (Dominican Republic)
Vanessa Valencia, President of the Alliance of Rare and Infrequent Diseases Associations of Panama (ALASER) (Panama)
Andreia Bessa, Federação Brasileira das Associações de Doenças Raras (FEBRARARAS) (Brasil)
Alejandro Andrade, President of the Chilean Federation of Rare Diseases (FECHER) (Chile)
Miguel Sarria, Representative of the Peruvian Federation of Rare Diseases (FEPER) (Peru)
Félix Galarza, President of the Ecuadorian Federation of Rare or Infrequent Diseases (FERPOF) (Ecuador)
Iliara Borges, Vice-President of the Uruguayan Foundation for Rare Diseases Research (FUPIER) (Uruguay)
Jesús Navarro (virtual)President of the Mexican Organization for Rare Diseases (OMER) and Vice-President of the Ibero-American Alliance for Rare or Infrequent Diseases (ALIBER) (Mexico)
Ronny Garro, General Director of the Rare Diseases Network of Costa Rica (Costa Rica)
Karen Narváez, Legal Advisor at the Colombian Federation of Rare Diseases (FECOER ) (Colombia)
Voices of Rare Diseases: Patient Testimonials
Four testimonies from patients with RD, highlighting their challenges and unique experiences to raise awareness.
David Santiago Vargas Rincón, Epidermólisis Bullosa Distrófica Q812 (Colombia)
John Durango, Distrofia muscular Duchenne, Fundación MADI. (Colombia)
Mariliny Villani, Porfiria, ASOLPOR. (Colombia)
Victoria Arteaga, SHER Foundation. (Colombia)
Presentation of ERCAL Standards in Public Policy
Alejandro Andrade, President of the Chilean Federation of Rare Diseases (FECHER) (Chile)
Global Legislative Practices for Advancing RD Policy
Betilde Muñoz (virtual) , Director of Social Inclusion of the Organization of American States (United States)
Alexandra Heumber Perry, Executive Director of Rare Diseases International (RDI) (Switzerland)
Yann Le Cam, Former Executive Director and Co-Founder of Rare Diseases Europe (EURORDIS) (France)
Diego Gil, President of Rare Diseases in the Caribbean and Latin America (ERCAL) (Colombia)
Félix Galarza, President of the Ecuadorian Federation of Rare or Infrequent Diseases (FERPOF) (Ecuador)
Advances in public policy and access for RD: Spain's experience
Representative of the Spanish Ministry of Health
Casa dos Raros 2023-2024
Dr. Roberto Giugliani, Professor of Genetics at Federal University of Rio Grande do Sul, Director of Casa dos Raros (Brazil)
Comprehensive RD Care and the Role of Reference Centers
Dra. Gioconda Manassero, President of the Genetics Society, Director of the Genetics Area of the San Borja National Children's Institute (Peru)
Dr. Ignacio Zarante, Director of the Institute of Human Genetics of the Javeriana University (Colombia)
Dr. Alejandro Gaviño, President of the Mexican Association of Genetics (Mexico)
Dr. Enrique Terán, National Academy of Medicine (Ecuador)
Dra. Mariela Larrandaburu (virtual), Director of the Rare Diseases and Anomalies Program
Vanessa Valencia, President of the Alliance of Rare and Infrequent Diseases Associations of Panama (ALASER) (Panama)
Coffee break
Andreia Bessa, Federação Brasileira das Associações de Doenças Raras (FEBRARARAS) (Brasil)
Fostering Research Initiatives in RD Across Latin America
Dr. Roberto Giugliani, Professor of Genetics at Federal University of Rio Grande do Sul, Director of Casa dos Raros (Brazil)
Dra. Olga Echeverri, Professor at Pontificia Universidad Javeriana (Colombia)
Dra. Ana Karina Zambrano, Director of the Genetic and Genomic Research Center at the Equinoccial Technological University (UTE) (Ecuador)
Dra. María Ximena Rojas (virtual), Researcher and Director of the Living Evidence to Inform Health Decisions program, Institut d’Recerca Hospital de la Santa Creu i Sant Pau (Colombia)
Iliara Borges, Vice-President of the Uruguayan Foundation for Rare Diseases Research (FUPIER) (Uruguay)
Best practices of regulatory agencies in the region
Manuel Donato (virtual), Executive Director of the National Commission for Health Technology Assessment and Clinical Excellence at the Ministry of Health (Argentina).
María José Villarraza (virtual), U.S. Agent for Food and Drug Administration (FDA) Registration Services at Bioxentys (United States)
João Batista da Silva Junior, Manager of Health, Tissues, Cells, Organs and Products for Advanced Therapies at ANVISA (Brazil)
Dr. Francisco Rossi, Director General, INVIMA (Colombia)
Sara Tylosky, President of Farmacon Global (United States)
Bridging the Gap: Ensuring Access to Innovation
- Strategies to ensure access and comprehensive care in the context of evolving healthcare systems in Latin America.
Andrés Forero, Member of the House of Representatives of Colombia (Colombia)
Alejandro Gaviño, President of the Mexican Association of Genetics (Mexico)
Dr. Enrique Terán, National Academy of Medicine (Ecuador)
María Eugenia Ossa, Rare Disease Access Manager, Amgen (Colombia)
Dick Salvatierra, President of Americas Health Foundation (AHF) (USA)
Denise Vallejo, Presidenta de Alianza Dominicana de Asociaciones de Pacientes (ADAPA) (República Dominicana)
Norma Hurtado, Senadora de la República de Colombia (Colombia)
Dr. Ignacio Zarante, Director of the Institute of Human Genetics of the Javeriana University (Colombia)
Diego Gil, President of Rare Diseases in the Caribbean and Latin America (ERCAL) and Executive Director of the Colombian Federation of Rare Diseases (FECOER) (Colombia)
Dick Salvatierra, President of Americas Health Foundation (AHF) (USA)
English 
Spanish