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In Partnership with

Uniting the rare community to learn, collaborate, and drive change for patients and families.

November 17-18, 2026

Children’s Mercy Research Institute
Big Slick Auditorium

The Zebra Summit is a two-day conference bringing together patients, families, researchers, and clinicians who understand the rare journey firsthand.

This inaugural event is more than a conference, it’s the start of a community. Connect with other rare patients and families, hear directly from leading rare disease researchers and clinicians, and be part of building a center of gravity for rare disease and rare cancer care and innovation right here in our region.

Register
Sponsor

Call for Posters

Researchers, clinicians, trainees, patient advocates, and community partners are invited to submit abstracts on work that may advance human health, diagnosis, treatment, care, or quality of life.

Agenda

Monday, November 16

3:00 PMInvite Only: Foundation Alliance Meeting

This meeting is for the Rare KC Foundation Alliance, a group of key nonprofit rare disease foundations serving the region.

If you did not receive an invitation but would like to be considered for participation, please contact Shaylee at shaylee@BioNexusKC.org.

4:00 PM - 6:00 PMBrews & Breakthroughs with KC RiBS

Location: Cinderblock, 10 E 18th Ave, North Kansas City, MO 64116

Speakers:
Kim Stanley, Braden’s Hope for Childhood Cancer
John Perry, PhD, Children’s Mercy

RSVP For Brews and Breakthroughs Here >

Tuesday, November 17

Location: Children's Mercy Research Institute

10:00 AMWelcome + RareKC Overview

  • Dennis Ridenour, BioNexus KC
  • Executive Director, RareKC

10:30 AMKeynote

  • John Ruth, Genetic Autism Alliance, Baker-Gordon Syndrome Foundation

11:30 AMPoster Presentation Flash Intros

12:00 PMLunch + Poster Presentations + Networking

1:00 PMDiagnostic Odyssey

  • Zac Leeker, University of Iowa
  • Tomi Pastinen, MD, PhD, Children’s Mercy
  • Laura & Patrick Sargent, Maddie’s Mission Foundation

2:20 PMNetworking

2:50 PMGenetic Therapies

  • Kimberly Fry, SLC6A1 Connect
  • Andrea Sierra Delgado, MD, University of Missouri
  • Eric Hacherl, PhD, NIIMBL

4:10 PMDay 1 Reception

Wednesday, November 18

Location: Children's Mercy Research Institute

8:00 AMWelcome

8:15 AMKeynote

  • Yatin Gokarn, Alexion

9:15 AMNetworking

9:25 AMMental Health & Psychosocial Considerations in Rare

  • Allison Foss, Myasthenia Gravis Association
  • Nikki Crump, RESTkc
  • Shayla Sullivant, MD, Children’s Mercy

10:45 AMNetworking

11:15 AMStudent Presentations

11:45 AMLunch + Presentations

1:30 PMRare Cancer

  • Matt Sanford, MU Research Reactor
  • Tomoo Iwakuma, MD, PhD Children’s Mercy Research Institute
  • Kim Stanley, Braden’s Hope

2:50 PMClosing

3:00 PMDay 2 Reception

2026 Sponsors

Gold

Silver

Bronze

2026 Sponsorship Info

Platinum

$15,000

  • 10 conference passes
  • 6-foot exhibit table
  • 1-Minute remarks on main stage
  • Panel discussion moderator
  • Recognition during program remarks
  • Dedicated social media feature
  • Recognition on digital invites
  • Logo + link on event website
  • Company name on event website
  • Logo on event screens and signage
  • Logo in post-event attendee email
  • Banner placement adjacent to exhibit table

Gold

$10,000

  • 8 conference passes
  • 6-foot exhibit table
  • Recognition during program remarks
  • Dedicated social media feature
  • Recognition on digital invites
  • Logo + link on event website
  • Company name on event website
  • Logo on event screens and signage
  • Logo in post-event attendee email
  • Banner placement adjacent to exhibit table

Silver

$5,000

  • 5 conference passes
  • 6-foot exhibit table
  • Recognition during program remarks
  • Recognition on digital invites
  • Logo + link on event website
  • Company name on event website
  • Logo on event screens and signage
  • Company name in post-event attendee email
  • Banner placement adjacent to exhibit table

Bronze

$3,000

  • 3 conference passes
  • Recognition during program remarks
  • Company name on event website
  • Logo on event screens and signage
  • Company name in post-event attendee email
Planning Committee

Andrea Atherton
Travere Therapeutics

Nicole Crump
RESTkc

J. Andrea Sierra Delgado, MD
University of Missouri

Allison Foss
Myasthenia Gravis Association

Julius Leary, EdD
Frontiers Clinical and Translational Science Institute

Randy Logan, PhD
BioNexus KC

Kelly Ranallo
Sanofi

Dennis Ridenour

Dennis Ridenour
BioNexus KC

Kim Tran, PhD
Kansas City University

Jay Vivian, PhD
Children’s Mercy