Our Story

When Kelly Ranallo’s family learned their daughter had been diagnosed with Turner’s Syndrome – a rare disease impacting only 70,000 women and girls in the U.S. — she initially felt hopeless and alone.

In navigating her daughter’s condition, Kelly began to conceive of an organization where all patients, families, medical doctors, researchers, industry members and community partners could come together to help reduce the isolation of living with a rare disease in Kansas City — that’s when RareKC was born.

Mission

RareKC’s mission is to drive innovation in the diagnosis, care and treatment of rare diseases by connecting and inspiring our community.

Resources

Access our list of resources to help you connect with other patients, find healthcare professionals, locate financial assistance, or get involved in research.

Rare Patient Stories

Patient stories are the story of RareKC. Read experiences from other patients and families along their RARE journeys.

Support

Everyone has the ability to become an advocate. Help us make a difference for rare patients and families.

Local Rare Community

We bring together all persons impacted by rare diseases and conditions in the Kansas City region and beyond. Our combined voices, actions, and resources create the network needed to ensure all those affected have a pathway to follow and a future of hope.

Contact Us
Connect with Us

Rare KC
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If you are seeking information right now, please contact us using the CONNECT button in the top right corner of our homepage, and we will get back to you within 3 business days.