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 Urrego, Viceministro de Salud Pública (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
Natan Monsores, Coordinator of Rare Diseases at the Ministry of Health of Brazil (Brazil)
Norma Hurtado, Senator of the Republic of Colombia (Colombia)
Norma Hurtado, Senadora de la República de Colombia (Colombia)
Dr. German Escobar, Secretary of Health, City of Cali (Colombia)
Andrés Forero, Member of the House of Representatives of Colombia (Colombia)
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, Director of the Hospital Universitario Mayor Méderi and Former Director of the National Institute of Health (Colombia)
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)
Andrea Brígida de Souza, Coordinator of Technology Incorporation at the Executive Secretariat of CONITEC (Brazil)
Dr. Héctor Castro, Executive Director of Health-R LLC (Colombia)
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)
Yaneth Giha, Executive Director of the Latin American Federation of the Pharmaceutical Industry (FIFARMA) (Colombia)
Jorge Ernesto García, Member of ISPOR (Colombia)
Coffee break
Innovative Financing Strategies for RD
Dra. Verónica Cazar Ruíz, President of the National Council for the Setting and Review of Drug Prices, Ministry of Public Health (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 Ministry of Health (Uruguay)
The experience of patient organizations 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)
Ariadne Guimarães Dias, Federação Brasileira das Associações de Doenças Raras (FEBRARARAS) (Brazil)
Alejandro Andrade, President of the Chilean Federation of Rare Diseases (FECHER) (Chile)
Anel Townsend, 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, 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)
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 Lee Kam, 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) and Executive Director of the Colombian Federation of Rare Diseases (FECOER) (Colombia)
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 Teran, National Academy of Medicine (Ecuador)
Coffee break
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)
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)
Bridging the Gap: Ensuring Access to Innovation
Andrés Forero, Member of the House of Representatives of Colombia (Colombia)
Yaneth Giha, Executive Director, Latin American Federation of the Pharmaceutical Industry (FIFARMA)(Colombia)
Alejandro Gaviño, President of the Mexican Association of Genetics (Mexico)
Dr. Enrique Teran, National Academy of Medicine (Ecuador)
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)
Dick Salvatierra, President of Americas Health Foundation (AHF) (USA)
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Spanish