Description
Regional Meeting on Rare Diseases in Latin America
In commemoration of Rare Disease Day, Latin America Patients Academy (LAPA) and the Andean Health Organization – ORAS CONHU organized the Regional Meeting on Rare Diseases in Latin America, bringing together public health experts, patient organization representatives, and health policy leaders. The event aimed to address the region’s challenges and opportunities to improve access to and quality of care for people living with rare diseases.
Key Topics Discussed:
🔹 National Policies and Plans: Colombia’s experience in developing strategies to improve the care and well-being of rare disease patients was highlighted.
🔹 Regional Challenges: Participants discussed the major obstacles faced by Latin American countries, including limited access to diagnosis, lack of epidemiological data, fragmented health policies, and high treatment costs.
🔹 Collaborative Efforts: The importance of cooperation between governments, civil society, and international organizations to implement national health plans and integrate rare diseases into universal health coverage strategies was emphasized.
🔹 Innovation in Diagnosis and Education: Innovative platforms were presented to enhance access to early diagnosis and develop educational programs to strengthen healthcare professionals’ training in rare diseases.
Featured Speakers:
✅ Eva MarÃa Ruiz de Castilla – Director of LAPA
✅ Dr. MarÃa del Carmen Calle Dávila – Executive Secretary of ORAS-CONHU
✅ Dr. Germán Escobar Morales – Secretary of Health of Cali, Colombia
✅ Luciana Escati Peñaloza – Executive Director of FADEPOF, Argentina
✅ Mo Mayrides – Director of Policy at LAPA
✅ Prof. Dr. Manuel Posada – Coordinator of the RIBERSER Program, Spain
✅ Dr. Ignacio Zarante – President of ACMGen, Colombia
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