"Road to Equity in Rare Disease"

2022 RareKC Symposium

February 25 - 26, 2022

Kansas City

About our 2022 RareKC Annual Symposium

Our 2022 RareKC Symposium is entitled “Road to Equity in Rare Disease” and will showcase a myriad of national and regional speakers and panelists from patients, families, healthcare providers (HCPs), researchers, community leaders, partner organizations, industry and representatives from national rare disease organizations.

Register Now

Registration is now open and will close Friday, February 18th.

Symposium Details & Locations

When it comes to rare disease collaboration, investments and cures, there are no boundaries to what we can achieve together. Our 2022 RareKC Symposium also pays tribute to the uniqueness of our Kansas City region and our Kansas and Missouri stateline. Our two-day event will take place in Missouri and Kansas at the following locations:

Friday, February 25th

2:00 PM - 6:30 PM

Polsinelli
900 W. 48th Place
Suite 900
Kansas City, MO 64112
View map

Saturday, February 26th

9:00 AM - 3:30 PM

KU Edwards Campus – Regnier Hall & Building
12600 S. Quivira Road
Overland Park, KS 66213
View map

Agenda

Friday, February 25th

2:00 PM - 6:30 PM

Hosted by Polsinelli
900 W. 48th Place
Suite 900
Kansas City, MO 64112

Vendor Exhibit Booths – from 2-6 pm

2:00 PM - 2:15 PMRareKC Conference Welcome

  • Kelly Ranallo, Founder, RareKC
  • Sara Hart Weir, CEO, RareKC

2:15 PM - 2:45 PMOpening Address

  • Dionne Stalling, Founder, Rare & Black

2:45 PM - 3:45 PMClinical Trial Design for Rare Disease

  • Dr. Edward Neilan, Chief Scientific Officer, NORD
  • Dr. Bryan Moore, Medical Affairs, Executive Director Indiana, S. Illinois, Missouri, & Kansas, U.S. Medical Affairs, Genentech
  • J. Steven Leeder, PharmD, PhD, Deputy Director, Children’s Research Institute, Associate Chair-Research, Dept of Pediatrics Children’s Mercy Hospital
  • Moderator: Tammy Ham, President, BioNOVUS Innovations

3:45 PM - 4:15 PMBreak

Networking Break

4:15 PM - 5:15 PMFuture of Rare Disease Collaboration, Cures & Community in KC

  • Kelly Ranallo, Founder/Vice Chair, RareKC
  • Dr. Tom Curran, Executive Director and CSO, Research Institute, Children’s Mercy Hospital
  • Dr. Alejandro Sánchez Alvarado, Executive Director and Chief Scientific Officer, Stowers Institute for Medical Research
  • Dr. Scott Weir, Institute for Advancing Medical Innovation (IAMI), Univ. of Kansas Medical Center
  • Audrey Masoner, Chief Financial Officer, Kansas, UnitedHealthcare Community & State
  • Moderator: Lesa Mitchell, Managing Director, Tech Stars

5:15 PM - 6:15 PMCocktail Reception

“Welcome to KC” – Cocktail Reception (9th Floor)

Saturday, February 26th

9:00 AM - 3:00 PM

Ku Edwards Campus – Regnier Hall & Building
12600 S. Quivira Road
Overland Park, KS 66213

Vendor Exhibit Booths & Community Fair 9AM – 3PM

9:00 AM - 9:15 AMRareKC Conference Welcome

  • Dennis Ridenour, Chairman, RareKC

9:15 AM - 9:45 AMOpening Keynote

  • Michael Freeland, Patient Advocate

9:45 AM - 10:30 AMNavigating the Rare Disease Journey in the Pediatric Population

  • Dr. Tomi Pastinen, Director, Genomic Medicine Center; Professor of Pediatrics, University of Missouri-Kansas City School of Medicine; Research Professor of Cancer Biology, University of Kansas School of Medicine

10:30 AM - 10:45 AMBreak

Networking Coffee Break

10:45 AM - 11:30 AMBreakout Panels

Equity in Rare Disease Clinical Research Participation and Trials Panel

  • Nicole Boice, Founder and Chief Engagement Officer, RARE-X
  • Dr. Teneasha Washington, Diversity, Equity, & Inclusion Lead, RARE-X
  • Dr. Jill Peltzer, PhD, APRN-CNS, Associate Professor, Univ. of Kansas School of Nursing
  • EveryLife Foundation

Financial Literacy for Rare Families – Special Needs Trusts, ABLE Accounts and Beyond

  • Ivailo Grigorov, MBA, ChSNC®, Financial Advisor, Northwestern
  • Eric Ochmanek, National ABLE Act Expert

11:45 AM - 12:15 PM Keynote Address - Make Your Voice Heard

  • Donna Pittman, Mother, Advocate, Journalist/Anchor KMBC-TV & KCWE-TV

12:15 PM- 1:00 PMLunch Break

  • Networking Lunch

1:00 PM - 1:45 PMDiversity, Equity & Inclusion in BioTech Innovation

Keynote Speaker:

  • Dr. Michelle McMurry-Heath, CEO, BIO

Fireside Chat:

  • Sonia Hall, President & CEO, BioKansas
  • Kelly Gillespie, Executive Director, MOBIO
  • Sara Hart Weir, CEO, RareKC

2:00 PM - 3:00 PM“Role of Funding & Community Partnerships to Support Rare Disease Treatments & Cures”

  • Dr. Nakela Cook, Executive Director, Patient-Centered Outcomes Research Institute (PCORI)
  • Sarah Gladstone, MD, Wolfram Syndrome
  • Kim Fry, Vice President, SlC6A1
  • Dr. Mazen Dimachkie, Professor, Neurology, Executive Vice Chairman, Department of Neurology, SOM-Kansas City, Associate Director, Associate Director of the Institute for Neurological Discoveries, SOM-Kansas City, Neurology, Clinical, Director, Director, Neuromuscular Division, SOM-Kansas City, Neurology
  • Moderator: Dr. Kim Kimmanu Professor; Chief of Staff, Chief of Strategy, Office of the Executive Vice Chancellor for Health Affairs, University of Missouri

3:00 PM - 3:45 PMFoundation Alliance Meeting

RareKC Foundation Alliance Meeting

Sponsors

Platinum Level

Silver Level

Bronze Level

Friends of RareKC

Exhibitors

Community Partners

Covid Protocols

Safety is our first priority. To ensure the health and safety of attendees and staff, as well as the patrons’ health and security.

Proof of full vaccination against COVID-19 is required to attend our RareKC Symposium. “Full vaccination” means that either 14 days have passed since receiving the second dose of FDA or WHO authorized double-dose vaccines or that 14 days have passed since receiving the sole dose of FDA or WHO authorized single-dose vaccines.

We are continuing to monitor all local, our venue and CDC guidelines to ensure a safe event for all participants.

We will also be offering a virtual option for those who cannot make it to the physical event.