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Welcome to Oklahoma Rare

Oklahoma Rare is a community-driven organization created by and for those impacted by rare diseases. With more than 395,000 Oklahomans living with a rare condition, too many families face long diagnostic journeys, limited treatment options, and barriers to care and support. Rare diseases are often isolating, and resources can feel scattered or out of reach.

 

That’s why Oklahoma Rare exists - to bring our community together, share resources, amplify voices, and create opportunities for connection and advocacy. By uniting rare families, we ensure that no one has to face the challenges of rare disease alone.

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Oklahoma Rare's Mission

Our mission is to unite Oklahoma’s rare disease community, strengthen access to resources, and champion policies that improve the lives of individuals and families impacted by rare conditions.

Upcoming Events

  • May Oklahoma Rare Disease Coalition meeting
    May Oklahoma Rare Disease Coalition meeting
    Wed, May 06
    May 06, 2026, 12:00 PM – 1:00 PM CDT
    Virtual Meeting | Zoom
  • Inaugural Oklahoma Rare Disease Fair
    Inaugural Oklahoma Rare Disease Fair
    Wed, Sep 30
    Bethany Children's Health Center
    Sep 30, 2026, 9:00 AM – 5:00 PM
    Bethany Children's Health Center, 6800 NW 39th Expy, Bethany, OK 73008, USA
    The NWRDC 2026 Oklahoma Rare Disease Fair aims to educate, engage, and inspire our community about the importance of rare disease research for all attendees - including patient advocates, patient organizations, pharma, biotech, government institutions, researchers, legislators, and payers.

Proudly Connected

Oklahoma Rare is part of a larger movement to strengthen and amplify rare disease voices- working together to build equity, share resources, and advocate for the rare disease community locally and globally.

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