Kentucky

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Rare Disease Advocacy in Kentucky

Rare disease advocacy in Kentucky 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 Kentucky.

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How to Get Involved
State Rare Disease Contacts

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

RARE Disease Advisory Council

An Advisory Council was established in 2019.

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 Kentucky

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 Kentucky

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.