​​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

Join families & community leaders to discuss the unique challenges and unmet needs of Rare Disease as we advance medical innovation in Kansas City.​ 
Individuals, families and friends whose loved ones have been touched by Rare Disease or a Genetic Condition are encouraged to attend; particularly those with and interest in advocating for rare disease and improved care coordination.

Registration is limited, please RSVP via facebook or e-mail before Feb. 28.


or Volunteer

Build Our Voice. Use Your Voice.

​​​RareKC LeaderShip Summit 2017 - Free + Open to the public

Thursday, March 2 - 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
or use our contact form.

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