Rare Disease affects over 350 million people worldwide, and the largest percentage are children. There are over 7,000 rare diseases that have been identified all with very unique needs, but many with little to no support. Although each individual disease may only impact a few, together the impact is in the millions. Rare disease is not so rare.
The Global Genes Project is broadly promoting the needs of the rare disease community, engaging the general public, garnering corporate support, under the "unifying symbol of hope" – the blue denim ribbon.
The Global Genes Project is a program of R.A.R.E. Project, a non-profit 501c3. R.A.R.E’s leadership is committed to ensuring that its programs support its mission, are relevant and impactful. R.A.R.E. exists 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 - 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 - Ed Winkelmann – Corporate Engagement Advisor
edwinkelmann@eteventures.com
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
- John Ditton – COO, Kakkis Everylife Foundation
- 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
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