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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

  • Feria inaugural de enfermedades raras de Oklahoma
    Feria inaugural de enfermedades raras de Oklahoma
    mié, 30 sept
    Centro de Salud Infantil Bethany
    30 sept 2026, 9:00 – 17:00
    Centro de Salud Infantil Bethany, 6800 NW 39th Expy, Bethany, OK 73008, EE. UU.
    La Feria de Enfermedades Raras de Oklahoma NWRDC 2026 tiene como objetivo educar, involucrar e inspirar a nuestra comunidad sobre la importancia de la investigación de enfermedades raras para todos los asistentes, incluidos los defensores de los pacientes, las organizaciones de pacientes, la industria farmacéutica, la biotecnología, las instituciones gubernamentales, los investigadores, los legisladores y los financiadores.

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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