Collaborate2Cure: Impact of Rare Disease – Patient and Family Voices

Impact of Rare Disease – Patient & Family Voices
February 28, 2023

11:30a – 1:30p

Kansas City University, Academic Center Rm. 200 or virtual via Zoom

Lunch will be provided.

Agenda
11:30a-11:45a: Check in and Networking (in-person attendees only)

11:45a-1:00p: Program

• Welcome, Series Overview, and Deliverables
  • Dennis Ridenour, President & CEO, BioNexus KC
• Panel Discussion
  • Economic Impact on Patients: Julia Jenkins, Executive Director, EveryLife Foundation for Rare Diseases
  • Patient Centered Research: Courtney Berrios, MSc, ScM, Certified Genetic Counselor, Children’s Mercy
  • ALS Patient & Veteran: Tony Vick
  • Parent Advocate: Linda Jones
  • Patient: Kol Jones
  • Moderator: Kim Kimminau, PhD, Senior Associate Dean for Administration and Planning, University of Missouri School of Medicine
• Closing Comments
  • Sara Hart Weir, MS, CEO, RareKC

1:00p-1:30p: Networking

Parking Map & Details

Free parking is available in Parking Lot G at the Southwest corner of Highland Avenue and Independence Avenue. The entrance to the lot is off of Highland Avenue and will have an event sign marking the entrance. After exiting the parking lot you will cross Independence Avenue on Kansas City University’s campus. There will be signs to direct you.

Link to join virtually:

https://KCUConferencing.zoom.us/j/85982103101

Meeting ID: 859 8210 3101