The First Latin American Congress on Rare Diseases, led and organized by AHF and supported by partnering organizations, aimed to improve the rare disease landscape and the quality of life for those living with rare diseases, their families, and caregivers in the region. The Congress featured 45+ panelists from 12+ countries and discussed various topics related to rare diseases, such as the diagnostic odyssey, challenges in the patient journey, advancing genetic testing, health personnel training, health technology assessment, financing mechanisms, and digital health. Latin American countries face similar challenges in improving rare disease management and care, and the Congress emphasized the need for collaboration, coordination, education, and cooperation to continue advancing the rare disease landscape in the region. AHF invites collaboration and strategic projects to improve the quality of life for those living with rare diseases in Latin America and the Caribbean.


Panelists Included

Adriana Robayo,

Alejandra Vázquez,

Alejandro Andrade,

Ana Cristina Ochoa,

Angela Chaves,

Antoine Daher,

Ariadne Guimarães,

Carlos Javier Alméciga,

Claudia Gonzaga-Jauregui, Mexico

Deborah Requesens,

Dick Salvatierra,

Diego Gil,

Durhane Wong-Rieger,

Elmira Safarova,

Enrique Teran,

Félix Galarza,

Gabriela Repetto,

German Escobar,

Gustavo Mendes,

Heidi Bjornson-Pennel,

Ignacio Zarante, Colombia

Irene Kanter-Schlifke,

Jacqueline Tovar,

Jesus Navarro Torres,

Juana Ines Navarrete, Mexico

Leonardo Arregoncés,

Luis Pino,

Manuel Espinoza,

Maria Elena Almendáriz,

Mariana Rico,

Mario Daniel Gómez,

Marisa Aizenberg, Argentina

Martha Lucia Tamayo,

Natalia Messina,

Olga Echeverri,

Paula Daza,

Reggie Garcia Robles,

Renata Curi,

Roberto Giugliani,

Roberto Rodrigues,
Dominican Republic

Ronny Garro,
Costa Rica

Tania Bachega,

Vanessa Valencia,

Yaneth Giha,

Hosts, Partners & Sponsors






Event Recording

Country Perspectives on Rare Diseases

Event Photos

Event Day 1

Event Day 2

Dr. Adriana Robayo

Executive Director of the Institute for Health Technology Assessment (IETS). (Colombia)

Dr. Alejandra Vázquez

Director of the Academic Department of the Faculty of Medicine, Autonomous University of Guadalajara. (Mexico)

Alejandro Andrade

President of the Chilean Federation of Rare Diseases (FECHER). (Chile)

Dr. Ana Cristina Ochoa

Medical Director, Takeda. (Colombia)

Angela Chaves

Patient Advocacy Lead at Biogen, Intercontinental Region, LATAM & APEC. (Colombia)

Antoine Daher

President of the Brazilian Federation of Associations of Rare Diseases (FEBRARARAS), and President of Casa Hunter. (Brazil)

Ariadne Guimarães Dias

Institutional Relations of Casa Hunter and the Brazilian Federation of Associations of Rare Diseases (FEBRARARAS). (Brazil)

Dr. Carlos Javier Alméciga

Director of the Institute of Inborn Errors of Metabolism, Pontificia Universidad Javeriana. (Colombia)

Dr. Claudia Gonzaga-Jauregui

Principal Investigator, International Human Genome Research Laboratory (LIIGH), National Autonomous University of Mexico (UNAM). (Mexico)

Dra. Deborah Requesens

Director of the JumpStart Program, Orphan Disease Center, University of Pennsylvania. (USA)

Dick Salvatierra

President of the Americas Health Foundation (AHF). (USA)

Diego Gil Cardozo

Executive Director of the Colombian Federation of Rare Diseases (FECOER). (Colombia)

Durhane Wong-Rieger

President and CEO of the Canadian Organization for Rare Diseases. (Canada)

Dr. Elmira Safarova

Co-Founder and CEO of Rarus Health SPA. (Chile)

Dr. Enrique Teran

Pharmacologist and President of the Academy of Sciences of Ecuador. (Ecuador)

Félix Galarza

Executive President of the Ecuadorian Federation of Rare Diseases (FERPOF).

Dr. Gabriela Repetto

Clinical Geneticist and Director of the Rare Diseases Program, Faculty of Medicine, German Clinic Universidad del Desarrollo. (Chile)

Dr. Germán Escobar

Former Vice Minister of Health and Social Protection of Colombia. (Colombia)

Dr. Gustavo Mendes Lima Santos

Research Scientist at the International Vaccine Institute (IVI). Former General Manager of Medicines and Biological Products at the National Health Surveillance Agency (ANVISA). (Brazil)

Heidi Bjornson-Pennell

Director of Scientific Programs, Chan Zuckerberg Initiative (CZI). (USA)

Dr. Ignacio Zarante

Professor of the Institute of Human Genetics of the Pontificia Universidad Javeriana, President of the Colombian Association of Medical Geneticists and Genomic Medicine, Coordinator of the Reference Center for orphan diseases of the San Ignacio University Hospital and advisor to the Ministry of Health of Bogotá in congenital defects and orphan diseases. (Colombia)

Dr. Irene Kanter-Schlifke

Head of Customer Insights & Strategy, Biogen. (Netherlands)

Jacqueline Tovar

Founder of the Initiative Think of Zebras, Mexico, President of Mujer Mexico. (Mexico)

Jesús Navarro Torres

President of the Mexican Organization for Rare Diseases (OMER).  (Mexico)

Dr. Juana Inés Navarrete

President of the Mexican Association of Human Genetics. (Mexico)

Dr. Leonardo Arregocés

Former Director of Medicines and Health Technology of the Ministry of Health and Social Protection of Colombia. Consultant to the World Bank. (Colombia)

Dr. Luis Pino

Medical Oncologist. Founder and CEO of OxLER. (Colombia).

Dr. Manuel Espinoza

Head of the Health Technology Assessment Unit of the Clinical Research Center, Pontificia Universidad Católica de Chile. (Chile)

María Elena Almendáriz

Representative of the Peruvian Federation of Rare Diseases (FEPER). 

Dr. Mariana Rico

Medical Director of Americas Health Foundation (AHF). (Colombia)

Mario Gómez

Managing Partner at Prospectiva Consulting. (Colombia)

Dr. Marisa Aizenberg

Academic Director of the Health Observatory of the Faculty of Law, University of Buenos Aires (UBA). (Argentina)

Dr. Martha Tamayo

Director of the Right to Disadvantage Foundation (FUNDALDE). (Colombia)

Dr. Natalia Messina

Director of Special Medicines and High Price of the Ministry of Health of the Nation, Argentina. (Argentina)

Dr. Olga Echeverri

Associate Professor of the Institute of Inborn Errors of Metabolism, Pontificia Universidad Javeriana. (Colombia)

Dr. Paula Daza

Executive Director of the Center for Public Policy and Innovation in Health, Universidad del Desarrollo. (Chile)

Dr. Reggie Garcia

Medical geneticist and health. Research Professor, Pontificia Universidad Javeriana. (Colombia)

Dr. Renata Curi

Director of Market Access and Public Affairs, Foresight. (Brazil)

Dr. Roberto Giugliani

Co-President of Casa dos Raros (Brazil).

Roberto Rodríguez

Vice President of the Dominican Alliance of Patient Associations (ADAPA).

Ronny Garro

Association Leader, Rare Disease Network Costa Rica (RED Enfermedades Raras). (Costa Rica)

Dr. Tania Bachega

President of the Brazilian Society of Neonatal Screening and Congenital Errors of Metabolism. (Brazil)

Vanessa Valencia

Social Work for aYOUdas Panama. (Panama)

Yaneth Giha

Executive Director of FIFARMA. (Colombia)

Bandera Urguguay

Task force created to work on rare disease patient and family law – In the first days of September, a working group was officially set up in Parliament with the aim of drafting a bill that takes into account the demands of rare disease patients and their families. This is the second part of the Resolution Rare 4 campaign, led by Eurordis (European Organization for Rare Diseases) and the International Committee for Rare Diseases.

Bandera Perú

Regulation of Law No. 29698, Law that declares of National Interest and Preferential Attention the Treatment of persons suffering from Rare or Orphan Diseases.

Bandera Panamá

Panama currently has Law 28 of October 28, 2014, which guarantees social protection to the population suffering from rare, infrequent and orphan diseases. The national interest in rare diseases is recognized by the State, seeking to guarantee access to health services, treatment and rehabilitation for people diagnosed with these diseases, in order for citizens to benefit from the different plans, programs and public health strategies to improve the quality and life expectancy of patients.

Bandera México

Internal REGULATIONS of the Commission for the Analysis, Evaluation, Registration and Follow-up of Rare Diseases – Aims to regulate the organization and operation of the Commission for the Analysis, Evaluation, Registration and Follow-up of Rare Diseases, as well as to establish the procedure and criteria to be followed for the definition, registration and follow-up of those diseases that should be considered as rare and, if necessary, the exclusion of those already defined as such.

Standing Commission Gazette
General Health Law

Bandera Colombia

Law 1392, 2010: by which it is recognized that orphan diseases represent a problem of special interest in health, given their low prevalence in the population, but their high cost of care, they require within the Social Security Health System an insurance mechanism different from that used for general diseases, including high-cost diseases, and highly specialized care processes with a large administrative follow-up component.

National Decree 1954 de 2012: “Whereby provisions are issued to implement the information system for patients with orphan diseases”. 

Agreement 537, 2013: by which the design and implementation of a strategy on the promotion of early detection, follow-up, rehabilitation and surveillance of people affected by orphan diseases in the Capital District.

bandera de chile

Law N° 20.850, june, 2015: This Law provides financial protection for specific health conditions, such as oncological, immunological and rare or infrequent diseases, which have been determined through a Supreme Decree of the Ministry of Health.

bandera brasil


In Brazil, neonatal screening for rare diseases has been implemented since 2001 and, since 2009, a national policy for comprehensive care in clinical genetics has been in place.

Policy for the Integral Attention to Subjects with Rare Diseases: establishing guidelines for offering comprehensive care (diagnosis, treatment and/or long term management) to individuals affected by rare diseases in the public unified health system (the same definition of World Health Organization for rare diseases, as those affecting less than 65 out of 100,000 individuals, was used). This policy defines an annual plan of action and financial and logistical support, and envisages the establishment of a national database (important for facilitating the access to high cost drugs, genetic tests, for instance) and the creation of reference treatment centers. These centers should be able to evaluate patients, perform genetic testing procedures, diagnose, treat and offer genetic counseling. The policy defines the two main axes, genetic and non-genetic rare diseases. In addition, it divides the genetic rare diseases in 3 groups: congenital anomalies & late-onset diseases, intellectual disability and metabolic disorders. In this fashion, genetic services in SUS will be installed and funded not by themselves, but as part of the more general policy of rare diseases.

Bandera Argentina

Law 26689. Comprehensive health care for people with rare diseases.– The purpose of this law is to promote comprehensive health care for people with Rare Diseases (RDD) and to improve the quality of life for them and their families.

Decree 794/2015. Regulation of Law 26689.

Resolution 2329/2014. National Program for Rare Diseases and Congenital Anomalies. The National Program of Rare Diseases and Congenital Anomalies is hereby created under the orbit of the national direction of community medicine, under the subsecretary of community medicine, maternity and children, of the Ministry of Health of the Nation.

Resolution 240/2019. Internal operating regulations of the National Commission for Patients with Spinal Muscular Atrophy. Whereby the internal operating regulations of the NATIONAL COMMISSION FOR PATIENTS WITH SPINAL MUSCULAR ATROPHY were approved.

Resolution 1453/2019. National Commission for Patients with Spinal Muscular Atrophy to operate within the orbit of the Rare Diseases Program. The NATIONAL COMMISSION FOR PATIENTS WITH SPINAL MUSCULAR ATROPHY is hereby created, which shall operate within the Rare Diseases Program of the National Directorate of Maternity, children and adolescents under the Secretariat of Health Promotion and Prevention and Risk Control.

Resolution 1115/2020. Guarantee the continuity of coverage for the treatment of patients with Spinal Muscular Atrophy, in types I, II and IIIA. Health Insurance Agents and Prepaid Medicine Entities must guarantee the continuity of coverage for the treatment of patients with Spinal Muscular Atrophy, types I, II and IIIA.