Rare Disease Advocacy in Illinois
Rare disease advocacy in Illinois 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 Illinois.
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State Organization
Name: Illinois Rare Disease Alliance
Website: https://www.illinoisrare.com/
Contact: Wayne Galasek, Co-Founder
Email: illinoisrare1@gmail.com
U.S. Congress Scorecard
See how Illinois’ Members of Congress are supporting the rare disease community with this Legislative Scorecard.
RARE Disease Advisory Council
An Advisory Council was established in 2016.
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 Illinois
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.
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.
Illinois Advocacy Resources
Insurance Commissioner
- Ann Gillespie
DOI.InfoDesk@illinois.gov
Department of Insurance
Board of Pharmacy Executive Director
- Robert Gerton
robert.gerton@illinois.gov
Health and Human Services
- https://hfs.illinois.gov/medicalclients/medicaidguide/applying.html
- Laura Phelan – Medicaid Administrator
- Laura.phelan@illinois.gov
Department of State Health Services
State Legislature Calendar
- State Legislature in Session – Click here
- Which Dates is Your State Legislature in Session – Click Here
State Legislature Website
Drug Utilization Board or P&T Committee
- DUR Board Website: Drug Utilization Review Board (DUR Board) | HFS (illinois.gov)
- Meeting Schedule: Meets quarterly (check website for schedule of meetings).
- Contact: Illinois Department of Health and Human Services Helpline, 1-800-843-6154
- Established DUR Boards and P&T Committees
