Rhode Island

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Rare Disease Advocacy in Rhode Island

Rare disease advocacy in Rhode Island 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 Rhode Island.

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State Rare Disease Contacts
RARE Young Adults
State Resources and News

Events

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New England Lobby Day

Oct 6 2026 – Oct 7

Online

Register

State Organization

Rare New England
Website: http://rarenewengland.org/
Contact: Nicole White, Executive Director
Email: nicole@rarenewengland.org

U.S. Congress Scorecard

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

RARE Disease Advisory Council

An Advisory Council was established in 2025.

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 Rhode Island

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 Rhode Island

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.