Rare Project is a non-profit 501(c)(3) charity committed to serve the 350 million people around the world suffering from over 7,000 RARE diseases, 95% of which have no therapy.
The management, board and advisors of the RARE Project are committed to our mission to:
- Raise Rare Disease Awareness and Education
- Unify and Empower a vibrant rare disease community
- Fund innovations that support in-their-lifetime rare disease research
Team R.A.R.E.
 Nicole Boice - President & Founder nicoleb@rareproject.org |
 Dean Suhr – COO & Director of Community Development deans@rareproject.org
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 Jason Omenn – Director, Business Development jasono@rareproject.org |
 Amy Grover – Director, Community Development amyg@rareproject.org |
 Jen Engleman – Community Development Manager jen@rareproject.org |
 Christie Draper – Community Development Manager christied@rareproject.org |
 Lisa James – Community Development Manager lisaj@rareproject.org |
Board of Directors
- Bruce Crair – Former COO, Local.com
- John Crowley – CEO, Amicus Therapeutics
- Jesse Dylan – Founder, Wondros
- Hugh Hempel – Parent Advocate/Technology Exec.
- Caroline Loewy – Parent Advocate, Former CFO of Corcept Therapeutics
- Peter Pellizzon – Founder, Hollencrest Capital, Philanthropist
- Allison Young – Esq.
Advisory Board: Science
- 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, MD Candidate, MHS, Johns Hopkins Bloomberg School of Public Health
- Christina Waters – PhD, Phillip Morris
- John Wilbanks – VP of Science, Creative Commons
Advisory Board: Advocacy
- Audrey Gordon – Executive Director, Progeria Research Foundation
- Chris Hempel – Founder, Addi and Cassi Fund
- Elizabeth Joshi – Joubert Syndrome Foundation
- Brad Margus – CEO, Envoy Therapeutics
- Lisa Moreno-Dickinson – CEO, StopCAIDNow
- Sue Kahn – National Tay-Sachs & Allied Diseases Association
- Roy Zeighami – Parent Advocate, SF4K.org