ABOUT

Children’s Rare Disease Network 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.

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


24701 LA PLAZA, #201 • DANA POINT, CA 92629 • PH: 949-248-7273 • info@crdnetwork.org

The Children's Rare Disease Network is a division of and developed by The R.A.R.E. Project, which exists to promote Rare disease Advocacy, Research & Education.
The R.A.R.E. Project is a non-profit 501(c)(3) corporation.