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Program 29. February 2020

Patient Organizations – Driving Solutions for Rare Disease Patients in Latin America

WHEN: 29 Feb. 2020
VENUE: Marriot Mexico City Reforma
LANGUAGE: Spanish / English (translation provided)

 

Entry: Free

 

CENTOGENE’s Rare Disease Day 2020 is a global initiative with events in Lahore, Berlin, and Mexico City for awareness raising amongst decision makers, researchers, health professionals, and the general public – signaling our global responsibility and dedication to patients, patient organizations, and local physicians around the world.


9:00 - 09:10

Welcome Address

DR. JESÚS NAVARRO, Vice President of Iberoamerican Alliance of Rare Diseases (ALIBER), Guadalajara, Mexico & President of Mexican Organization of Rare Diseases (OMER)
ROBERT DE DEUGD, Senior Vice President CENTOGENE, Germany

9:15 - 9:20

Greetings from Rare Disease Day - Berlin

9:20 - 9:45

 

Keynote Speech - Rare Diseases: The Importance of Early Diagnosis

PROF.  ATUL MEHTA, Department of Haematology, Royal Free London NHS Foundation Trust, London, UK

9:45 - 10:00 

Patient Organizations in Latin America - Network and Activities

JUAN CARRIÓN, President of Spanish Federation of Rare Diseases (FEDER), Madrid, Spain

10:00 - 10:15

Rare Disease Patients and Their Diagnostic Odyssey

DR. JUANA INÉS NAVARRETE, Head of Genetics Department, Hospital Central del Sur de Alta Especialidad, Mexico City, Mexico

10:15 - 10:55

PANEL 1:
Patient Organizations’ Contributions to Expanding Knowledge and Developing Therapies

MODERATOR: DR. ABDIEL ESQUIVEL, Subdirector of Pharmacovigilance of Mexican Pharmaceutical Association, Mexico City, Mexico
David López, Associated Country Director of Biomarin, Mexico City, Mexico
Karla Ruiz de Castilla, Director of ESPERANTRA Patient Organization, Lima, Perú
Nicolás Linares, Executive and General Manager of Ultragenix, Mexico City, Mexico
Eliecer Quispe, Director of Federation of Patients with Lysosomal Storage Disorders Equador (FEPEL), Quito, Equador

10:55 - 11:15

Coffee Break

11:15 - 11:55

PANEL 2:
Maximizing Access to Newborn Screening and Diagnostic Testing

MODERATOR: DR. LINETTE ARNAUD, Head of Rare Disease Department, Hospital Civil Juan I. Menchaca, Guadalajara, Mexico
Dr. Inés Morales, Area of Prevention of Neonatal Diseases and Neonatal Screening, Division of Reproductive Health, PrevenIMSS, Unit of Health Assistance of IMSS, Mexico City, Mexico
Dr. Juana Inés Navarrete, Head of Genetics Department, Hospital Central del Sur de Alta Especialidad, Mexico City, Mexico
Regina García Próspero, President of Brazilian Alliance of Mucopolysaccharidoses (ABRAMPS), Sao Paulo, Brazil
Xochtil Mendoza, President of Amigos Metabólicos de México, Mexico City, Mexico

11:55 - 12:30

PANEL 3:
Social Media and Modern Technologies: New Potentials for Organizing Rare Disease Patients

MODERATOR: HÉCTOR VALLE, President of Fundación Mexicana para la Salud A.C., Mexico City, Mexico
Dr. Jordi Pérez, Head of Patient Advice and Liaison Service at CENTOGENE, Berlin, Germany
Luz Victoria Salazar, Director of Colombian Association of Patients with Liposomal Storage Disorders (ACOPEL), Bogota, Colombia
Alejandra Zamora, National Coordinator of Group of Fabry, Mexico City, Mexico

12:30 - 12:45

Summary & Closing Remarks

PROF. ATUL MEHTA, Department of Haematology, Royal Free London NHS Foundation Trust, London, UK
JESÚS NAVARRO, Vice President of Iberoamerican Alliance of Rare Diseases (ALIBER), Guadalajara, Mexico & President of Mexican Organization of Rare Diseases (OMER)

12:45 - 13:30

Mexican Folk Dance

Dance group "ESPECT ARTE"

13:30 - 14:30

Lunch


The program is subject to changes.