Social Justice, Advocacy, and Health Equity, Community-Based Practice / Community-Based Participatory Action Research Advancing Rare Disease Rights and Policies in Latin America: A Call to Action

By Amiel Katz, BA; Daniel Wainstock, JD

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Citation

Katz A, Wainstock D. Social justice, advocacy, and health equity, community-based practice / community-based participatory action research advancing rare disease rights and policies in Latin America: a call to action. HPHR. 2022;69. 

Social Justice, Advocacy, and Health Equity, Community-Based Practice / Community-Based Participatory Action Research Advancing Rare Disease Rights and Policies in Latin America: A Call to Action

Download the poster here: https://bcph.org/wp-content/uploads/2… 

People living with a rare disease are amongst the most vulnerable groups in society. They have been historically marginalized and systematically stigmatized. 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 on how to improve public policies and national legislation for persons living with rare diseases in three countries: Brazil, Peru, and Colombia.

About the Author

Amiel Katz, BA

Daniel Wainstock, JD