Global Genes is managed by Team RARE and RARE Project, a non-profit 501(c)(3) corporation. Our leadership team, board of directors and advisory teams are committed to programs centered on our core mission: Rare Disease, Advocacy, Research, Education.

Global Genes | Team RARE
Nicole Boice Andrea Epstein Amy Grover
President & Founder Executive Director Director, Operations
Carrie Ostrea Lisa James Kathy O’Connor
Director, Advocacy Manager, Tech Strategies Manager, Development
Jennifer Engelman Ashley Girtman Katie Mastro
Community Manager Program Manager Program Manager
Ilana Jacqueline Manager, Blog


Board of Directors
 Nicole Boice, Founder & President  John Crowley, Board Member  Natalie Douglas, Board Member
Nicole Boice John F. Crowley Natalie Douglas
Global Genes | RARE Project CEO, Amicus Therapeutics Parent Advocate Co-founder, Partner and Executive Chairman Rocket Science
 Jesse Dylan, Board Member  Hugh Hempel, Board Member  Caroline Loewy, Board Member
Jesse Dylan Hugh Hempel Caroline Loewy
Founder, Wondros Founder, Solution Therapeutics Parent Advocate EVP & CFO of Tobira Therapeutics Parent Advocate
Barbara Lavery, Board Member Peter Pellizon, Board Member  Norman Schmeltzer, Board Member
Barbara Lavery, Board Chair Peter J. Pellizzon Norman Schmeltzer
President, Zoomedia Founder, Hollencrest Capital O’Connor, Schmeltzer & O’Connor


Strategic Advisors
 Jason Omenn, Strategic Advisor Brian Campion, Strategic Advisor
Jason Omenn Brian Campion
Senior Director, Business Develoment QLess Director, Business Development Oraclinical


Scientific Advisory Board
  • Beth Ann Baber – PhD, CEO, Nicholas Conor Institute for Pediatric Cancer Research
  • Ian Eslick – PhD, MIT Media Lab
  • Emil Kakkis – PhD, CEO, Ultragenyx
  • Jimmy Lin – PhD, Rare Genomics
  • Christina Waters – PhD, Phillip Morris
  • John Wilbanks – VP of Science, Creative Commons