Pennsylvania

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Rare Disease Advocacy in Pennsylvania

Rare disease advocacy in Pennsylvania 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 Pennsylvania.

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State Rare Disease Contacts
RARE Young Adults and RARE Artists
State Resources and News

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

RARE Disease Advisory Council

An Advisory Council was established in 2017.

See more information on established rare disease advisory councils.

Rare Disease Caucus

Date Created: 2019
News: https://pardac.org/lawmakers-chosen-as-co-chairs-for-pennsylvania-rare-disease-caucus-2/

Co-Chairs:
- Representative Barb Gleim
  (R-Montgomery)
- Representative Mark Longietti
  (D-Mercer)
- Senator Judy Ward
  (R-Blair/Cumberland/Franklin/Fulton/Huntingdon)
- Senator John Blake
  (D-Lackawanna/Luzerne/Monroe)
Point of Contact: Marie Conley, Chair of Pennsylvania Rare Disease Advisory Council & Founder of The Cushing Disease Fund
Email: marie.conley@live.com

Current Bipartisan Rare Disease State Legislative Caucuses.

Newborn Screening in Pennsylvania

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 Pennsylvania

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.