Rare Disease Advocacy in Indiana
Rare disease advocacy in Indiana 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 Indiana.
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State Organization
Currently this state does not have a state organization.
U.S. Congress Scorecard
See how Indiana’s Members of Congress are supporting the rare disease community with this Legislative Scorecard.
RARE Disease Advisory Council
An Advisory Council was established in 2023.
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 Indiana
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.
Indiana Advocacy Resources
Insurance Commissioner
- Holly W. Lambert
consumerservices@idoi.in.gov
Department of Insurance
Board of Pharmacy Executive Director
- Kim Synder – Director
pla4@pla.in.gov
Health and Human Services
- https://www.in.gov/medicaid/
Mitch Roob, Acting Director of Medicaid
mitch.roob@fssa.in.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:
FSSA: Medicaid Policy: OMPP Meetings and Agendas - Meeting Schedule:
Meets monthly (check website for schedule of meetings). - Contact:
- Medicaid Program Office Contact Form: https://in.accessgov.com/fssa/Forms/Page/fssa/contact-us/1
- Established DUR Boards and P&T Committees
