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Rare Disease Advocacy in California

Rare disease advocacy in California 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 California.

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How to Get Involved
State Rare Disease Contacts
Take Action
RARE Young Adults and RARE Artists
State Resources and News

State Organization

Name: California Action Link for Rare Diseases (CAL RARE)
Website: http://calrare.org/
Contact: Angela Ramirez Holmes, Founder & President
Email: angela@calrare.org

U.S. Congress Scorecard

See how California’s Members of Congress are supporting the rare disease community with this Legislative Scorecard.

RARE Disease Advisory Council

The California RDAC was established in 2024.

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.

Newborn Screening in California

Newborn screening programs vary widely by state, leading to disparate health outcomes. While some states screen for thirty diseases, other states screen for over sixty.

Screening in California

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.