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