Advisors

Medical and Scientific Advisors

Scott Demerest MD, Children’s Hospital Colorado
Liz Horn PhD, MBI, LHC Biosolutions
Kim Kimmaneau PhD, MA, KU Family Medicine Research
Daniel McArthur PhD, Rare Genomes Project, Broad Institute
David Pearce PhD, Sanford Health
Ethan Perlstein PhD, Perlara
Rob Ring Phd, Kaerus Biosciences
Steve Rodems PhD, Retrophin
Eric Sid MD, NIH, NCATS
Ryan Taft PhD, Illumina, iHOPE
Audrey Thurm Phd, National Institute of Mental Health (NIMH)
Chris Waters PhD, Rare Science

Patient Advocacy Advisors

David Fajgenbaum, Castleman’s Disease Collaborative Network

Alastair Kent, former CEO, Genetic Alliance UK

Brad Margus, AT Children’s Project

Megan O’Boyle, Phelan McDermid Syndrome

Luke Rosen, KIF1A.ORG

Christian Rubio, Global Genes
Gina Szajnuk, Rare Undiagnosed Network
Vanessa Vogel-Farley, Dup15q Alliance

Business Advisors

John Kielty, ThirdRock Ventures
David Nagler, ARM Foundation for Cell & Gene Medicine

Governance/Policy Advisors

Deven McGraw JD, ciitizen

James Valentine JD, Hyman Phelps & McNamara
John Wilbanks, Sage Bionetworks

Global Strategy Advisors

Nicola Bedlington, European Patients Forum, Data Saves Lives Initiative
Harsha Rajasimha, IndoUSrare
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