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PATIENTS' DATA POWERING PROGRESS
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Medical and Scientific Advisors
Scott Demerest MD, Children’s Hospital Colorado
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Liz Horn PhD, MBI, LHC Biosolutions
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Kim Kimmaneau PhD, MA, KU Family Medicine Research
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Daniel McArthur PhD, Rare Genomes Project, Broad Institute
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David Pearce PhD, Sanford Health
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Ethan Perlstein PhD, Perlara
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Rob Ring Phd, Kaerus Biosciences
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Steve Rodems PhD, Travere Therapeutics
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Eric Sid MD, NIH, NCATS
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Ryan Taft PhD, Illumina, iHOPE
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Audrey Thurm Phd, National Institute of Mental Health (NIMH)
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Chris Waters PhD, Rare Science
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Sophia Zilber, MA, Pfizer
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Patient Advocacy Advisors
David Fajgenbaum, Castleman’s Disease Collaborative Network
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Alastair Kent, former CEO, Genetic Alliance UK
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Brad Margus, AT Children’s Project
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Megan O’Boyle, Phelan McDermid Syndrome
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Luke Rosen, KIF1A.ORG
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Christian Rubio, Global Genes
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Gina Szajnuk, Rare Undiagnosed Network
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Vanessa Vogel-Farley, Dup15q Alliance
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Business Advisors
John Kielty, ThirdRock Ventures
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David Nagler, ARM Foundation for Cell & Gene Medicine
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Governance/Policy Advisors
Deven McGraw JD, ciitizen
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James Valentine JD, Hyman Phelps & McNamara
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John Wilbanks, Biogen
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Global Strategy Advisors
Nicola Bedlington, European Patients Forum, Data Saves Lives Initiative
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Harsha Rajasimha, IndoUSrare
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