RareKC

Monday February 29, 2016 • 8am- noon • Kauffman Foundation Conference Center • Free

8am- noon
Contact

Individually families affected by rare dieseases and genetic disorders are challenged by limited access to coordinated medical care, FDA approved drugs and treatments and established advocacy organization to support them and offer a voice other than their own.  The RareKC Project aims to bring together our community in creating a collaborative voice and advance innovation to position Kansas City as a nationally recognized leader in Rare Disease.

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On Monday February 29th, in coordination with World Rare Disease Day, the nation will be watching Kansas City as we champion our city to turn “denim blue” for those affected by a rare genetic condition. .  We will host a city-wide “Jeans for Genes” campaign to bring awareness to the lives both affected and lost due to a rare disease. 

In addition, a Rare Disease town hall event will be held on Monday Feburary 29th at the Kauffman Foundation.  This 4 hour event will bring together families, advocates and community leaders from the University of Kansas Mecial Center, the Stowers Medical Institute, Children’s Mercy Hopsital as well as a number of local business to share a collaborative vision.  This meeting  will not only identify the challenges faced by individuals and families with rare diseases but also set the foundation to advancing  medical innovation in new drug and treatment development.