PATIENTS' DATA POWERING PROGRESS

RARE-X Announces the Expansion of its Board of Directors to Support the Organization’s Growth and Launch Efforts

New members will enhance RARE-X’s programs, pilots, and operational expansion with strategic expertise and leadership 

Aliso Viejo, CA — Feb 10, 2021 — RARE-X today announced three new board members who will help support the nonprofit’s work in structured patient data collection, responsible data sharing, and the promise of its Federated Data Sharing Platform for data sharing and analysis. The new board members are Cynthia Grossman, PhD, director at Biogen; Jason Colquitt, CEO of Across Healthcare; and Simon Frost, CEO of Tiber Capital Group.

“The additions of Cynthia Grossman, PhD, Jason Colquitt, and Simon Frost to the board are very strategic. All bring a depth of knowledge in patient advocacy, health tech, scaling-up organizations, and operational excellence,” said Nicole Boice, RARE-X Co-Founder/Executive Director. “We are honored to have them join an already extraordinary board and thrilled to channel their expertise, talent, and energy into helping RARE-X build towards the future.”

Cynthia Grossman, PhD, is a director at Biogen, leading the MS PATHS program, a collaborative research network aimed at generating evidence to improve outcomes for patients living with Multiple Sclerosis. Prior to joining Biogen, Cynthia was director at FasterCures, a center of the Milken Institute. Before joining FasterCures, she was chief of the HIV Care Engagement and Secondary Prevention Program in the Division of AIDS Research (DAR) at the National Institute of Mental Health (NIMH). Cynthia has spent her career working to improve health by expanding opportunities for patients’ perspectives to shape the processes by which new therapies are discovered, developed, and delivered. Cynthia graduated Phi Beta Kappa from Earlham College with a B.A. in psychology and biology and earned her Ph.D. in clinical psychology from the University of Vermont. She has been the recipient of a National Science Foundation Incentives for Excellence Scholarship, an NIH Ruth L. Kirschstein National Research Services Award, and a Postdoctoral Fellowship in Pediatric Psychology at the Warren Alpert Medical School of Brown University. 

Jason Colquitt is CEO of Across Healthcare, a company he founded in 2012, leveraging his 20+ years in the healthcare technology field. His work has caused positive disruption within the healthcare industry as he has partnered with many organizations ranging from small start-ups to some of the world’s largest health companies including Greenway Health, Walgreens Boots Alliance, Quintiles, IQVIA, Cystic Fibrosis Foundation, Muscular Dystrophy Association, American College of Surgeons, and American Heart Association. Jason has worked directly with patients, caregivers, physicians, regulators, and researchers. Jason was diagnosed with Carnitine Palmitoyltransferase II Deficiency (CPT II), a rare mitochondrial disease. He has used his experiences and technical background to help the rare disease community. Jason holds a Bachelor’s degree in Applied Mathematics from Auburn University.

Simon Frost is the CEO of Tiber Capital Group. Before joining Tiber Capital Group, he was the chief investment officer of Greencourt Capital, a public company with approximately $1 billion in real estate assets. Before joining Greencourt Capital, Simon was president and COO of Key Properties. He was also the co-founder of The American Home, one of the largest single family rental aggregators in the United States. Simon holds Bachelor’s and Master’s degrees in economics from Cambridge University in England, and a Bachelor’s degree in finance from the University of South Africa. Simon serves as director of both Cure AHC and Hope For Annabel, charities dedicated to finding therapies for Alternating Hemiplegia of Childhood. 

The current RARE-X Board of Directors includes: Betsy Bogard, head of program and alliance management within the 4:59 Initiative at 5AM Ventures; Nicole Boice, co-founder and executive director of RARE-X; Jason Colquitt, CEO of Across Healthcare; Wendy Erler, vice president of Patient Experience, STAR and Advocacy at Alexion Pharmaceuticals; Simon Frost, CEO of Tiber Capital Group; Peter Goodhand, CEO of Global Alliance for Genomics and Health; Cynthia Grossman, PhD, director at Biogen; Walt Kowtoniuk, PhD, COO of MOMA Therapeutics and venture partner at Third Rock Ventures; Craig Martin, president of Rithm Health and interim CEO at Global Genes; Katherine Maynard, principal at PWR; Angeli Moeller, PhD, head of Pharma Informatics International at Roche; David Pearce, PhD, president of Innovation and Research for Sanford Health; Anthony Philippakis, MD, PhD, chief data officer at Broad Institute; John Reynders, PhD, chief data scientist at Reynders Consulting; Morrie Ruffin, co-founder and board member of ARM Foundation for Cell and Gene Medicine and managing partner, Adjuvant Partners; Alvin Shih, MD, president and CEO at Catamaran Bio.

ABOUT RARE-X

RARE-X is a 501(c)(3) patient advocacy organization focused on supporting the acceleration and development of life-altering treatments and future cures for patients impacted by rare disease.  Enabled by best-in-class technology, patients, researchers, and other technology vendors, RARE-X will gather structured, fit-for-purpose data to share broadly, benefitting from 21st-century governance, consent, and federated data sharing technology.  RARE-X is building the largest collaborative patient-driven, open-data access project for rare diseases globally. For more information, visit www.rare-x.org.

Media Contact:

Tom Hume, Marketing Communications – RARE-X

tomh@rare-x.org

 

PDF version of the press release:

RAREX New BOD Members 2 10 21 Pdf

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