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"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.

Agenda | Speakers | Sponsors

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

  • Edward Neilan, MD, PhD, Chief Medical and Scientific Officer, NORD
  • Bryan Moore, PhD, Medical Affairs, Executive Director Indiana, S. Illinois, Missouri, & Kansas, U.S. Medical Affairs, Genentech
  • Jay Vivian, PhD, Faculty Researcher, Children’s Mercy Research Institute
  • 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
  • Tom Curran, PhD, Executive Director and CSO, Research Institute, Children’s Mercy Hospital
  • Scott Weir, PharmD, PhD, Institute for Advancing Medical Innovation (IAMI), University of Kansas Medical Center
  • Audrey Masoner, Chief Financial Officer, Kansas, UnitedHealthcare Community & State
  • Annie Kennedy, Chief of Policy, Advocacy, & Patient Engagement, EveryLife Foundation
  • 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 AMEquity in Rare Disease Clinical Research Participation and Trials Panel

Equity in Rare Disease Clinical Research Participation and Trials Panel

  • Nicole Boice, Founder and Chief Engagement Officer, RARE-X
  • Teneasha Washington, PhD, MPH, Diversity, Equity, & Inclusion Lead, RARE-X
  • Jill Peltzer, PhD, APRN-CNS, Associate Professor, Univ. of Kansas School of Nursing
  • Annette D. Campbell, RN, BSN, MPA, Director, Score 1 for Health, Kansas City University (KCU)
  • Moderator: Sara Hart Weir, MS, CEO, RareKC 

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

  • Ana Cohen, PhD, Assistant Director, Molecular Genetics, Children’s Mercy Hospital, Assistant Professor of Pathology, University of Missouri-Kansas City School of Medicine

10:30 AM - 10:45 AMBreak

Networking Coffee Break

10:45 AM - 11:30 AMBreakout Panels

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
  • Kacy Seitz, ChFC, ChSNC, CLTC, Wealth Management Advisor, Northwestern Mutual

Addressing Ethical Risks in Emerging Healthcare Technologies

  • Lindsey Jarrett, PhD, Principal Investigator; Ethical AI Initiative at the Center for Practical Bioethics
  • Matthew Pjecha, MS, Ethics Lead; Ethical AI Initiative at the Center for Practical Bioethics
  • Polo Camacho, PhD, Program Manager & Community Engagement Specialist

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

  • Donna Pitman, 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

  • Michelle McMurry-Heath, MD, PhD, President & CEO, BIO

Fireside Chat

  • Sonia Hall, President & CEO, BioKansas
  • Dee George, State Government Affairs, Novartis
  • Nicole Wells, Program Manager, Global Liver Institute’s Pediatric and Rare Liver Diseases / EveryLife Foundation Representative
  • Moderator: Kelly Ranallo, Founder, RareKC

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

  • Nora McGhee, PhD, Senior Program Officer, Science, PCORI
  • Sarah Gladstone, MD, Wolfram Syndrome
  • Kim Fry, Vice President, SLC6A1 Connect
  • Mazen Dimachkie, MD, 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 Kimminau 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

Speakers

View All Speakers
  • Nicole Boice, Founder and Chief Engagement Officer, RARE-X
  • Polo Camacho, PhD, Program Manager & Community Engagement Specialist
  • Annette D. Campbell, RN, BSN, MPA, Director, Score 1 for Health, Kansas City University (KCU)
  • Ana Cohen, PhD, Assistant Director, Molecular Genetics, Children’s Mercy Hospital, Assistant Professor of Pathology, University of Missouri-Kansas City School of Medicine
  • Tom Curran, PhD, FRS Senior Vice President, Executive Director and Chief Scientific Officer, Children’s Mercy Research Institute
  • Mazen M. Dimachkie, MD,  tenured Professor of Neurology and Director of Neuromuscular Division at the University of Kansas Medical Center (KUMC)
  • Kimberly Fry, Vice President, SLC6A1 Connect
  • Dee George, State Government Affairs, Novartis
  • Sarah Gladstone, MD, Wolfram Syndrome
  • Ivailo Grigorov, MBA, ChSNC, Northwestern Mutual
  • Sonia M. Hall, President & Chief Executive Officer, BioKansas
  • Tammy Ham, President BioNovus Innovations, LLC
  • Michelle McMurry-Heath, MD, PhD President & CEO, BIO
  • Lindsey Jarrett, PhD, Ethical AI Initiative at the Center for Practical Bioethics
  • Annie Kennedy, Chief of Policy, Advocacy, & Patient Engagement, EveryLife Foundation
  • Kim S. Kimminau, PhD, Professor, Department of family and community medicine, University of Missouri and Professor Emerita, Department of family and community health, University of Kansas
  • Audrey Masoner, Chief Financial Officer for the UnitedHealthcare Community Plan of Kansas
  • Nora McGhee, PhD, Senior Program Officer, Science, PCORI
  • Lesa Mitchell, General Manager, Techstars
  • Bryan Moore, PhD, Medical Affairs Executive Director Genentech
  • Edward Neilan, MD, PhD, Chief Medical and Scientific Officer at National Organization for Rare
    Disorders
  • Eric Ochmanek, Director of Special Projects, Ohio State Treasurer
  • Tomi Pastinen, MD, PhD, Director of the Genomic Medicine Center (GMC) at Children’s Mercy Kansas City
  • Jill Peltzer, PhD, APRN-CNS, Associate Professor, Univ. of Kansas School of Nursing
  • Donna Pitman, Mother, Advocate, Journalist/Anchor KMBC-TV & KCWE-T
  • Matthew Pjecha, MS, Ethics Lead; Ethical AI Initiative at the Center for Practical Bioethics
  • Kelly Ranallo, Founder RareKC and Founder/President of the Turner Syndrome Global Alliance (TSGA)
  • Dennis Ridenour, President & CEO at BioNexus KC
  • Kacy Seitz, ChFC, ChSNC, CLTC, Wealth Management Advisor, Northwestern Mutual
  • Dionne L. Stalling, Founder, Rare & Black
  • Jay Vivian, PhD, Research Associate Professor and Scientific Director of the Transgenic and Gene Targeting Facility, University of Kansas Medical Center
  • Teneasha Washington, PhD, MPH, Diversity, Equity, & Inclusion Lead, RARE-X
  • Sara Hart Weir, MS, CEO, RareKC
  • Scott J. Weir, PharmD, PhD , Institute for Advancing Medical Innovation (IAMI), University of Kansas Medical Center
  • Nicole Wells, Program Manager, Global Liver Institute’s Pediatric and Rare Liver Diseases/EveryLife Foundation Representative

Sponsors

Platinum Level

Children's Mercy

Silver Level

KC Frontiers

Bronze Level

BioNexus KC
Every Life
Polsinelli
Alexion

Friends of RareKC

KU
MU Next Gen

Exhibitors

Genentech
Sanofi Genzyme
IFOPA
Owens Sickle Cell
Ability KC
Horizon
Genomic Answers for Kids

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.