If the cost presents a challenge, please contact Shaylee Yount for further information.
Powered by BioNexus KC in collaboration with RareKC, this event aims to raise awareness and accelerate progress in the diagnosis, care, and treatment of rare diseases. Join patients, families, caregivers, and advocates as we unite to create change for all people living with a rare disease.
Event Details
March 2, 2026
11:30 AM – 3:00 PM
KC Chamber Boardroom
30 W. Pershing Rd. Ste 301, Kansas City, MO
Parking: West Yards Parking Garage at Union Station. Validation will be provided at registration desk.
Agenda
11:30 AM
Check in & Lunch
12:00 PM
Welcome: Dennis Ridenour, BioNexus KC & Kelly Ranallo, RareKC
12:05 PM
Pipeline for Treatment for Ultra Rare Diseases: J. Andrea Sierra-Delgado, MD, University of Missouri NextGen Precision Health
12:40 PM
Overview and Impact of NORD® Rare Disease Center of Excellence: Bryce Heese, MD, Children’s Mercy
1:15 PM
Empowerment Through Clinician-Family Partnership: Nicole Crump, RESTkc
1:55 PM
Program Reflections
3:00 PM
Adjourn
Speakers
Nicole Crump, MPA
RESTkc
Kelly Ranallo
Rare KC
J. Andrea Sierra-Delgado, MD
University of Missouri
Bryce Heese, MD
Children’s Mercy
Dennis Ridenour
BioNexus KC
2026 Sponsors
Premier
Supporting
Did you know?
BioNexus KC is a regional convener and catalyst for life sciences innovation in the Kansas City region. Operating at the nexus of human and animal health, BioNexus KC promotes scientific progress and strengthens the impact of research happening in our region. Through collaboration and strategic leadership, BioNexus KC helps accelerate discovery and amplify the Kansas City region’s role as a hub for life sciences innovation.
RareKC drives innovation in the diagnosis, care and treatment of rare diseases by connecting and inspiring our community. RareKC was created to connect the rare community – to empower our voices and inspire innovation throughout the medical and research community – all for the single purpose of rare.
BioNexus KC is a collaborative organization where all perspectives are welcomed. Together, we work to advance the KC region.