Rare KC

Kansas City non-profit for families challenged by rare genetic conditions and diseases


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Every pair of “genes” make us unique and rare in our own way. Please join us on Monday, February 29th, 2016, by pulling out your favorite pair of jeans as we turn Kansas City “denim blue” in recognition of our individuals and our families whose lives are challenged by a rare disease. Jeans for Genes: ... [Read more]


Register for The RareKC Town Hall to create awareness of rare disease in Kansas City. This free event is open to individuals, families and friends whose love ones have been touched by rare disease. Show your support and help raise awareness for rare diseases and improve access to treatments and medical representation for individuals with ... [Read more]


Rare diseases, by definition, are diseases that affect fewer than 200,000 people in the United States. Yet, they present a significant health care concern since there are almost 7,000 rare diseases, affecting more than 25 million Americans and their families. Rare diseases may involve chronic illness, disability, and often premature death. Rare diseases are complex, ... [Read more]


Did you know that 50% of the people affected by rare diseases are children? Rare diseases are responsible for 35% of deaths in the first year of life and 30% of children with rare disease will not live to see their 5th birthday. Here in the United States, a disease is considered “rare” it affects fewer than ... [Read more]


World Rare Disease Day will be held on Monday, February 29, 2016 to bring awareness to the world about the impact of rare diseases on so many people, worldwide. On this day, various activities take place in the United States, Europe, Russia, Japan and elsewhere around the world. On February 29th, 2016, the world will ... [Read more]