​​Everyone has the ability to become an advocate.

There is no special training or specific experience required. The more voices we have behind our mission, the greater progress we will achieve toward our mission of building a center of excellence for rare conditions in Kansas City.


  • Share your Rare Story here on our website or via our facebook page here.
  • Educate your provider on your unique needs and challenges with the healthcare system.
  • Advocate for Rare -- in whatever way works for you. Share your story, express your needs & concerns, look for improvements in  the healthcare delivery system

Build Our Voice. Use Your Voice.

Join families and community stakeholders as we discuss the unique challenges and unmet needs of Rare Disease. This town hall event is free and open to the public.
Individuals, families and friends whose loved ones have been touched by rare disease or a genetic condition are encouraged to attend, particularly those interested in advocating for rare disease and improved care coordination. Please come prepared with your strengths, resources and positive suggestions for improving and advancing rare care!

Required registration is limited to the first 200 individuals to do so. Please register using the form below or e-mail info@rarekc.org before Feb. 26.

​​​​​RareKC TownHall Event 2018 - Free + Open to the public

Monday, March 5 - 8am through Noon

Kauffman Foundation Conference Center


There are many ways you can help!
You can make a personal donation, volunteer your time, or become a corporate alliance member.


If you would like more information about volunteering your time or becoming a corporate ally, contact info@rarekc.org
or use our contact form.


Monetary donations are tax-exempt and provide essential support for growing RareKC's initiative.


Donate


or Volunteer

​2018 TownHall Registration

Events