In Partnership with

Uniting the rare community to learn, collaborate, and drive change for patients and families.

November 17-18, 2026

Children’s Mercy Research Institute
Big Slick Auditorium

2026 Speakers

Ana Cohen, PhD

Assistant Clinical/Research Director, Molecular Genetics Lab
Children’s Mercy

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Nicole Crump

Founder & Executive Director
RESTkc

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J. Andrea Sierra Delgado, MD

Assistant Research Professor
Mizzou NextGen Precision Health
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Allison Foss

Executive Director
Myasthenia Gravis Association
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Kimberly Fry

Vice President
SLC6A1 Connect
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Sarah Gladstone

Head of Condition Navigation
GeneSprout

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Eric Hacherl, PhD

Senior Fellow, Viral Vectors Program
NIIMBL (The National Institute for Innovation in Manufacturing Biopharmaceuticals)

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Tomoo Iwakuma, MD, PhD

Professor and Endowed Chair for The Braden’s Hope for Childhood Cancer in Pediatric Molecular Oncology,
Associate Director of Academic Career Development,
Center for Molecular Oncology and Cellular Therapeutics,
Children’s Mercy Research Institute
Children’s Mercy Hospital
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Bret Koncak

Co-Founder
mejo
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Zac Leeker

Newborn Screening Follow-up Program Manager
University of Iowa
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Tomi Pastinen, MD, PhD

Vice President | Associate Chief Medical Officer for Clinical and Research Integration
Dee Lyons/Missouri Endowed Chair in Pediatric Genomic Medicine
Children’s Mercy
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John Ruth

Founder and Principal Officer
Genetic Autism Alliance
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Matt Sanford

Executive Director
MU Research Reactor
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Laura Sargent

President
Maddie’s Mission Foundation
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Kim Stanley

Executive Director
Braden’s Hope for Childhood Cancer
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Shayla Sullivant, MD

Physician, Pediatric Psychiatry
Children’s Mercy
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Jay Vivian, PhD

Doctoral Research Faculty
Division of Clinical Genetics
Department of Pediatrics
Children’s Mercy
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