OUR LEADERSHIP
The distinguished leadership of the Children’s R.A.R.E. Disease Network and its parent organization, The R.A.R.E. Project, is comprised of a visionary group of men and women who are leading efforts world-wide related to rare disease. Their roles are to help guide the organization, ensuring that programs & resources are relevant to the stakeholders within the rare disease community.
R.A.R.E. = Rare disease Advocacy, Research and Education
BOARD OF DIRECTORS
Bruce Crair, COO and President, Local.com - Read Bio >>
Caroline Loewy, CFO Corcept Therapeutics - Read Bio >>
J. Martin Tenenbaum, PHD, Chief Scientist CollabRx, Founder CommerceNet
ADVISORY BOARD
Segolene Ayme, MD, PhD
Dir Research INSERM, Founder Orphanet
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Beth Ann Baber, PhD
Co-founder and CEO of The Nicholas Conor Institute for Pediatric Cancer Research
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John Douglas, MD, MBA
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Chris Hempel
Parent Advocate, The Addi and Cassi Fund Co-Founder, Spark PR
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Brad Margus
CEO Envoy Therapeutics, Founder AT Children's Project
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Sandra Noack, MA, Development Consultant
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Herah Osborne
Parent Advocate, Fragile X, Philanthropist
Christina Waters, PhD, MBA
President, Cell Therapeutics Europe and Systems Medicine, LLC
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EXECUTIVE TEAM
President/Founder - Nicole Boice - Read Bio >>
Chief Counsel - Allison Young - Read Bio >>
HONORARY BOARD
Eric & Jennifer Barnard, Rhett Syndrome
Mrs. Kris Howsen, Williams Syndrome
Tom & Shari Hume, Cure JM
Mrs. Grace LeRoy, Ring Chromosome 21
Darryl & Kelly Seymour, Jouberts Syndrome
Ms. Andrea Shelly, Fragile X
KIDS LEADERSHIP COMMITTEE
- Secretary - Jackson Watkins - Read Bio >>
- Peter Auriemma - Read Bio >>
- Maxwell Boice - Read Bio >>
- Carter Jenkins - Read Bio >>
- Makenna Rieden
- Kennedy Solomon. - Read Bio >>
VOLUNTEER'S – WORKING TO MAKE A DIFFERENCE
Catherine Calhoun
Kathleen Covey
Elizabeth Joshi
Julian Levine
