Rare Disease Advocacy in Puerto Rico
Rare disease advocacy in Puerto Rico is critical to improving access to diagnostics, treatment, and coordinated care. Because key healthcare decisions are made at the state level, strong local advocacy helps ensure better coverage, resources, and outcomes for the rare disease community across Puerto Rico.
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State Organization
Currently this state does not have a state organization.
For more information, please reach out at advocacy@rareadvocates.org.
U.S. Congress Scorecard
See how Puerto Rico’s Members of Congress are supporting the rare disease community with this Legislative Scorecard.
RARE Disease Advisory Council
An Advisory Council has not been established yet.
See more information on established rare disease advisory councils.
Rare Disease Caucus
Current Bipartisan Rare Disease State Legislative Caucuses.
Don’t see your state? If you would like to be part of the process to start a rare disease state caucus, please reach out at advocacy@rareadvocates.org.
RARE Young Adults
RARE Young Adults brings together motivated members of the rare disease community, ages 16–30, to build confidence, strengthen advocacy skills, and create meaningful impact in public policy.
Puerto Rico Advocacy Resources
Insurance Commissioner
- Suzette Del Valle
http://ocs.pr.gov/
Health and Human Services
- Medicaid in Puerto Rico
- Contact: Carlos A. Santiago-Rosario
Department of State Health Services
State Legislature Calendar
State Legislature Website
