Advancing rare disease policy in latin America: A call to action

Title : Advancing rare disease policy in latin America: A call to action

Abstract:

People living with a rare disease are amongst the most vulnerable groups in society. They have been historically marginalized and systematically stigmatized, especially in middle and low-income countries. It is estimated that 300 million people worldwide live with a rare disease. Despite that, many countries today, especially in Latin America, still lack consideration of rare diseases in public policies and national laws. Based on interviews with patient advocacy groups in Latin America, we aim to provide recommendations for lawmakers and policymakers in Brazil, Peru, and Colombia on how to improve public policies and national legislation for persons living with rare diseases in these three countries.

Biography:

Daniel Wainstock is a Rare Disease Patient Advocate and Health Law Researcher at the Pontifical Catholic University of Rio de Janeiro (PUC-Rio), in Brazil. He advises lawmakers and policymakers in Latin American countries on Rare Disease-related policies. He has also worked as a Volunteer at Rare Diseases International (RDI), on advocacy efforts for the WHO Resolution on Rare Diseases.