A RARE Evening with RareKC

September 26, 2024

As part of Global Genes’ RARE Advocacy Summit in Kansas City, RareKC is proud to host this evening event in the heart of our city to mark the advocacy, activism and action of our global rare disease movement.

Our Story

When Kelly Ranallo and her husband George lost their daughter, Katie, to a rare condition, they felt their world closing in around them. After receiving the news of yet another rare diagnosis affecting their other daughter, Kelly and George began their rare journey.   

In navigating their daughter’s Turner’s Syndrome diagnosis, Kelly began to conceive of an organization where individuals, families, physicians, researchers and community partners would come together to  share ideas, overcome the unique challenges, and help reduce the isolation of living with a rare disease in Kansas City — that’s when RareKC was born.

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

Access our list of resources to find extended support in Kansas City, including useful tips and information about education, financial assistance, as well as support services to help you better navigate your rare journey. 

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

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.

Share your rare story

RareKC invites you to share your story. Join other patients and families who have contributed their personal accounts of living with a rare disease. Together we are stronger than RARE!

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