Gabriel Slider Photo courtesy of Alexandria Cox with Serendipity Photography What is Rare? Collectively, rare diseases affect 30+ million Americans and approximately 250,000 Kansas Citians courtesy of Alexandria Cox with Serendipity Photography Petersen Slider Photo courtesy of Alexandria Cox with Serendipity Photography Who We Are We activate change in the lives of those impacted by rare diseases. Mira Crump What We Do We connect and inspire change to eliminate the challenges of living with a rare disease in Kanas City.

Rare Disease Summit

July 30, 2022

Building Patient Education & Advocacy Pathways in Lysosomal Storage Disorders (LSDs)

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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