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Ending the Diagnostic Odyssey and Navigating the Lifespan of Rare Disease

Rare Disease Summit

October 26-27, 2023

at the Children’s Mercy Research Institute

CMRI Auditorium
2401 Gillham Rd.
Kansas City, MO 64108
Parking Info (PDF)

RareKC's 2023 Summit will bring together the rare disease community to accelerate the diagnosis, care and treatment of rare conditions.

Agenda

Thursday, October 26

4:00 PM - 6:30 PM
Speakers

Children’s Mercy Research Institute
CMRI Auditorium
2401 Gillham Rd.
Kansas City, MO 64108
Parking Info (PDF)

Exhibitors are welcome to set up at 2:30pm

4:00 PMWelcome Address - CMRI/RareKC

  • Kelly Ranallo, Founder & Vice Chair, RareKC

4:15 PMPanel: How Regional Technologies and Resources can Drive Innovation

How Regional Technologies and Resources can Drive Innovation

  • Bret Koncak, Co-Founder, mejo
  • Michele Herndon, MSN, RN, Program Director, UDNF
  • Moderator: Dennis Ridenour, Board Chair & Executive Director, BioNexusKC

5:00 PM - 6:30 PMExhibitors Open & Networking Reception

  • Exhibitors Open (Lobby Area)
  • Networking Reception (2nd Floor Garden)

Friday, October 27

7:30 AM - 4:00 PM
Speakers

Children’s Mercy Research Institute
CMRI Auditorium
2401 Gillham Rd.
Kansas City, MO 64108
Parking Info (PDF)

7:30 AMBreakfast, Exhibitor Open & Networking

  • Breakfast, Exhibitor Open & Networking (Lobby)

8:00 AMWelcome Remarks & Kansas City Rare Disease Innovation Accelerator

Welcome Remarks

  • Children’s Mercy Research Institute

Kansas City Rare Disease Innovation Accelerator – “Vici Syndrome” Innovation

  • Dr. Jay Vivian, Director, Rare Disease Model Research Program, Associate Professor of Pediatrics, University of Missouri-Kansas City School of Medicine; Research Associate Professor of Pediatrics, University of Kansas School of Medicine
  • Dr. Scott Weir, Director, Institute for Advancing Medical Innovation, University of Kansas Medical Center
  • Zita Surprenan, Advocate & Grandmother

9:00 AMWe are RareVoices: A Panel Discussion

  • Terrence Gallagher, Co-chair of the Children’s Mercy Research Institute (CMRI) Community Advisory Board, Member of the Children’s Mercy Family Advisory Board, RareVoices Member
  • Melissa Wirtz, M.A. CCC-SLP, RareVoices Member
  • Nancy Petersen, MSW, Community Liaison for Ability KC, RareVoices Member
  • Moderator: Courtney Berrios, MSc, ScM, CGC, Senior Genetic Counselor, Children’s Mercy Kansas City, Research Professor, University of Missouri Kansas City, Developed Rare Voices

10:00 AMPatient Centered Care for the Genetics Community – Innovation and What’s to Come

  • Lauren Bartik, Certified Genetic Counselor and Assistant Program Director at KUMC Genetic Counseling Program
  • Dr. Bryce Heese, Chief of Genetics, Children’s Mercy Kansas City
  • Doug D. Myers, MD, Physician and Section Chief of Bone Marrow Transplantation, Children’s Mercy Hospital, Professor of Pediatrics, University of Missouri-Kansas City School of Medicine; Clinical Associate Professor of Internal Medicine, University of Kansas School of Medicine
  • Moderator: Andrea Atherton, Regional Medical Director, Horizon

10:45 AM"The Evolving Impact of Technology on Rare Diseases"

  • Dr. Bryan Moore, Medical Affairs Executive Director, Genentech

Learn from concepts and case studies where technology such as AI, wearables, and home based technology can address health disparities, accelerate the diagnostic journey, and provide patients, providers, and caregivers new insights on disease mitigation.

11:30 AMLunch & Networking

  • Lunch & Networking (Lunch Served in Lobby)

12:00 PMKansas City: A Regional Hub on Rare Disease Innovation - PANEL

  • Blake Benton, Cofounder, Coming Together for a Cure
  • Dr. Brett W. Sperry, Cardiologist, Saint Luke’s Mid America Heart Institute
  • Josh Moore, PharmD, Director of Pharmacy, MO HealthNet Division, Missouri Department of Social Services
  • Moderator: Michelle Davis, Executive Director, iFOPA

1:00 PMThe State of Research & Clinical Care in Neurological Rare Disease

  • Dr. Keith Gary, Vice President, Mission Acceleration, The ALS Association
  • Dr. Mindy Bridges, Assistant Professor, Hearing and Speech, University of Kansas
  • Moderator: Kimberly Fry, Vice President, SLC6A1 Connect

2:00 PMKansas City Rare Data Efforts

  • Josh Staley, UMKC & Lauren Harrell, PhD candidate in the lab of Dr. Gerald Wyckoff

3:00 PMThe Diagnostic Odyssey

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

4:00 PM Summit Wrap Up

  • Summit Wrap Up and Closing Remarks

Sponsors

Platinum

Children's Mercy

Bronze

BioNexus
Every Life
Genentech
Horizon
Sanofi Genzyme
Frontiers CTSI

Industry Partners

Alexion
Amicus
Biogen
Ipsen
Kyowa Kirrn
Sarepta
Takeda
Ultragenyx

Community Partners

Mizzou:NextGen
KU

2023 Sponsorship Levels

Platinum: $25K

  • Sponsor lunch break (ad or logo up on screen for duration)Full page recognition in meeting agenda digital booklet (may be an ad with link to preferred page)
  • Full page recognition in RareKC Journal (may be an ad) or publish article or position statement
  • Recognition from chair at Opening and Closing sessions
  • Featured logo and recognition in Program booklet
  • Featured logo and recognition on Annual Meeting Website.
  • Full complimentary conference registrations for 8 representatives
  • Preferred space option for 2023 in person meeting
  • Electronic listing of all registered attendee emails and organization
  • 20 minutes dedicated to speak/present

Gold: $15K

  • ½ page recognition in meeting agenda booklet (may be an ad with link to preferred page)
  • ½ page recognition in RareKC Journal (may be an ad) or publish article or position statement
  • Recognition from podium at Opening and closing sessions
  • Exclusive recognition for one break (ad or logo on screen for duration)
  • Logo recognition in Program booklet
  • Logo recognition on Annual Meeting Website
  • Full complimentary conference registration for 5 representatives
  • Preferred space option for 2023 in person meeting
  • Electronic listing of all registered attendee emails and organization
  • 20 minutes dedicated to speak/present

Silver: $10K

  • ¼ page recognition in meeting agenda booklet (may be an ad with link to preferred page)
  • ½ page recognition in RareKC Journal (may be an ad) or publish article or position statement
  • Recognition from podium at opening sessions
  • Logo recognition in Program booklet
  • Logo recognition on Annual Meeting Website
  • Full complimentary conference registrations for 3 representatives
  • Preferred space option for 2023 in person meeting
  • Electronic listing of all registered attendee emails and organization

Bronze: $5k

  • Name recognition in meeting agenda booklet
  • Logo recognition on Annual Meeting Website
  • Electronic listing of all registered attendee emails and organization

EXHIBIT Opportunities for Vendors & Sponsors:

Industry Partner
$2,500 – BOTH DAYS

Community Partners Vendor
(i.e., Community-Based Service Organization, Nonprofits)
$500 – BOTH DAYS

RareKC Disease Foundation Alliance Members
Included in cost associated with being a RareKC Partner.

RareKC Disease Foundation Alliance Members
Included in cost associated with being a RareKC Partner.

  • RareKC will comp 2 tickets for foundation representatives.
  • Exhibit display for Foundation Alliance members is all day on Friday.