Join the
Oklahoma Rare Disease Coalition
The Oklahoma Rare Disease Coalition brings together patients, families, patient organizations, providers, and advocates to ensure the voices of the rare disease community are heard at the State Capitol. With more than 395,000 Oklahomans impacted by rare conditions, our coalition works to educate lawmakers, shape policies, and advance initiatives that improve care, access, and quality of life for rare families across the state.
By uniting around shared challenges and solutions, the Coalition's goal is to amplify the power of the rare community and drive lasting change through state-level policy and advocacy.
Organization Partners
Latest Coalition Newsletter:
Advocacy Resources
Find your Oklahoma Legislators
Engaging with your elected officials is a powerful way to advocate for the rare disease community in Oklahoma. The Find My Legislator tool on the Oklahoma Legislature’s website allows you to identify your state representatives and senators by entering your home address. This resource is invaluable for rare disease advocates.
LegiScan: Your Legislative Tracking Resource
Staying informed about legislative developments is crucial for effective advocacy. LegiScan offers a comprehensive platform to monitor bills across all 50 states and Congress, providing real-time updates and detailed legislative data. By leveraging LegiScan, advocates can stay ahead of legislative developments, engage with policymakers, and ensure that the needs of the rare disease community are represented and addressed.
The Rare Foundation's (formerly the EveryLife Foundation)
Oklahoma advocacy page brings together state-specific tools and information for people who want to improve rare disease policy and care. It includes contact information for Oklahoma Rare, Oklahoma’s congressional scorecard, newborn screening information, advocacy resources, and links to state agencies and lawmakers.
The page also provides information about Rare Disease Advisory Councils, legislative caucuses, RARE Young Adults, and state policy priorities. Oklahoma does not currently have a Rare Disease Advisory Council, making continued community engagement and advocacy especially important.
Visit the Oklahoma advocacy page here: https://www.rareadvocates.org/states/oklahoma/
Downloads
Oklahoma Rare Voices
2025
Click image to download
Oklahoma Rare Disease Impact
Click image to download
Impacto de las enfermedades raras en Oklahoma
Click image to download
RDDC Health Equity and Rare Disease
Click image to download
