Join Us Monday, March 4, 2019


We invite you to join us for the RareKC Summit ’19, featuring researchers, clinicians, advocates and rare disease patients and families, as we strive to inspire change and innovation in our rare disease community.

Our Summit will feature a line-up of leading professionals and advocates in the rare disease community, as well as the opportunity to hear from families who are impacted by the challenges of rare diseases and conditions. We have planned a full day of sessions that touch on various issues in our community, such as patient advocacy, patient-centered outcomes, approach to research and development in rare diseases, genetics, the value of coordinated care, legislative advocacy and the development of a Rare Disease Center of Excellence in Kansas City.

The RareKC Summit is proud to present Mark Dant, Board of Directors Chair at the EveryLifeFoundation in Washington, D.C., as our keynote speaker. The event will also feature local speakers from The University of Kansas Health System, the Turner Syndrome Global Alliance and Children’s Mercy Hospital to name a few. Download the agenda and schedule of events here, and purchase tickets here.



RareKC Stakeholder Summit

​Thank you to our Reach for Rare Sponsors!