Collaborate2Cure: The State of Rare Disease

*This event will be offered in person and also live streamed virtually.

The State of Rare Disease
January 26, 2023
3:00 – 5:00 PM
Children’s Mercy Research Institute, 2401 Gillham Rd, Kansas City, MO -OR- Virtual

Agenda

• Networking | Refreshments
• Program | State of Rare Disease in the KC Region
  • Welcome, Series Overview and Deliverables
    • Dennis Ridenour, CEO, BioNexus KC and Sara Hart Weir, CEO, Rare KC
  • Presentations: Current state of rare disease
    • Pediatric
      • Tom Curran, PhD, Executive Director and CSO, Children’s Mercy Research Institute
    • Adult
      • Steven Stites, MD, Vice Chancellor Clinical Affairs, University of Kansas Medical Center
    • Pharmacy
      • Jay Bryant-Wimp, RPh, Clinical Advisor, Optum Frontier Therapies
    • Patient
      • Kevin Wake, Patient Advocate, Uriel E. Owens Sickle Cell Disease Association of the Midwest
    • Panel discussion
      • Moderator: Kelly Ranallo, Founder, RareKC
        • Where are the gaps?
        • Where do we go from here?
• Networking | Refreshments