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.
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 EveryLife Foundation has shared key state policy priorities that help guide advocacy efforts across the country - from improving access to treatments and coverage to strengthening newborn screening programs.
These priorities are an excellent resource for anyone interested in learning how state-level policies can make a difference for people living with rare diseases.
Learn more here: https://everylifefoundation.org/rare-disease-state-policy-priorities/
Downloads
Oklahoma Rare Voices
2025
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Oklahoma Rare Disease Impact
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Impacto de las enfermedades raras en Oklahoma
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RDDC Health Equity and Rare Disease
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