If you are visiting our page, I’m glad you have found us. Receiving a diagnosis of a rare disease can feel incredibly overwhelming. We, as rare families, are often faced with immense challenges of trying to find information about our conditions, the right doctors who understand our needs (or who are at least willing to learn), people who perhaps share the same condition, or researchers who can bring us hope of a new treatment or cure. We each search for connections and information that can provide us some glimpse of what the future may hold or a roadmap on how we will be able to get there, and ultimately a place where we can connect with others and learn from those who share our journey.
RareKC was created to connect the rare community – to empower our voices and inspire innovation throughout the medical and research community – all for the single purpose of rare. We will bring together both the passion and resources of our rare community in order to elevate our strength in numbers and foster an environment of hope for ourselves, and everyone else that joins us in this journey. Thank you for being part of the RareKC family, we look forward to the amazing work that we will inspire together.
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 navigating their rare journey.
In navigating their child’s condition, Kelly began to conceive 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.
For a genetic condition or a disease to be considered “rare”, it means that fewer than 200,000 people in the United States are impacted by that disease. With more than 7,000 diseases falling into the category of rare, the nationwide population of rare patients exceeds even that of cancer and HIV/aids combined.
Despite our size, the rare community lacks a unified voice, as only 15% of rare diseases have organizations or foundations providing support or driving research.
At RareKC, we believe by uniting the resources of all rare patients, families, medical doctors and researchers in the Kansas City area, the isolation we feel could be lifted and greater light could be shined on diagnosis, treatment, and understanding of rare diseases.
We are here – in Kansas City – to help patients and caregivers to find the answers and support they need. Based on national statistics provided by NORD, we estimate that nearly 250,0000
Kansas City is in a special position as we span both states, Kansas and Missouri, and have access to phenomenal resources for our families.
While the challenges and statistics for rare patients and families are daunting, we are grateful to have health systems and institutions like Children’s Mercy, University of Kansas Medical Center, St. Lukes, AdventHealth, KU Frontiers, and others – world-class hospitals and research institutes right here in Kansas City that are actively redefining how we diagnose and treat rare patients. We bring the rare disease community together to keep our families home!