Scott Demerest MD, Children’s Hospital Colorado
PATIENTS' DATA POWERING PROGRESS
PATIENTS' DATA POWERING PROGRESS
Advisors
Medical and Scientific Advisors
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