The RARE Project Announces Big Team Additions, Setting the Stage For Continued Success

Thirty (30) million people in the US and 350 million people worldwide are affected by rare disease.  Rare disease affects more children and their families then AIDS and CANCER combined worldwide.  The RARE Project, developed by various rare disease leaders, is an organization with 3 simple goals; to help bring awareness to, resources for and unity to a much deserving community worldwide.

The RARE Project is proud to announce its new Board of Directors and Advisory Board that have been assembled to help drive the organization, ensure it meets its mission to help drastically impact the global rare disease community.  Included on the board are leaders who have a variety of expertise, all critical to the success of the RARE Project;

  • Bruce Crair, Technology executive,
  • John Crowley, CEO Amicus Therapeutics and parent advocate,
  • Jesse Dylan, Founder, Wondros,
  • Hugh Hempel, Technology executive and parent advocate,
  • Caroline Loewy, COO Corcept Therapeutics and parent advocate
  • Peter Pellizzon, Managing Director Hollecrest Capital and Philanthropist

The BOD will help ensure that RARE meets its mission and goals and will continue to help identify other strategic board participants.  “The RARE Project in its first few years has created tremendous momentum, partnerships and alliances and is now at a point where it needs to take the organization to the next level”, stated Nicole Boice, President RARE Project. “Assembling this team will allow us to continue to build on the organizations early success, and and ensure the growth, sustainability and longevity of RARE’s programs and initiatives. RARE’s BOD is committed to the RARE disease community and is working together in an effort to make life better for those living with rare disease.

The first BOD meeting this past June focused on redefining the mission which states;  The RARE Project exists to raise rare disease awareness, unify and empower a vibrant global rare disease community, and fund innovations to support ‘in-their-lifetime’ rare disease research.   The entire team is committed to ensuring that RARE meets the goals that the mission sets forth.  The RARE team will be continuing to develop programs and campaigns that address it’s three core areas of focus, and are already looking ahead to a compelling 2012.  RARE Programs and initiatives include: The Children’s Rare Disease Network, The RARE Blog, The RARE Fund (launching in 2012), and The Global Genes Project.

In addition to the BOD, the RARE Project is continuing to build a compelling Advisory Board that consists of expertise within Science and Patient Advocacy.  Currently, Global Genes Project is proud to announce its early Scientific Advisory Board Members;

  • Beth Ann Baber PhD, Nicholas Conor Institute for Pediatric Cancer Research
  • Ian Eslick PhD,  MIT Media Lab
  • Emil Kakkis PhD, Ultragenyx
  • Jimmy Lin PhD, Johns Hopkins
  • Christina Waters PhD, Phillip Morris
  • John Wilbanks JD, Science Commons

In addition, Patient Advocacy Advisors will be a critical group adding their personal experiences and expertise to many of the RARE Project patient advocacy and community building initiatives globally.  A thank you to the RARE Project’s early Patient Advocacy Advisors;

  • Audrey Gordon JD, Progeria Research Foundation
  • Chris Hempel, Addi and Cassie Fund
  • Elizabeth Joshi, Joubert Syndrome Foundation
  • Sue Kahn, National Tay Sachs Foundation
  • Brad Margus, AT Children’s Project
  • Lisa Moreno-Dickinson, StopCAIDNow

Also in the news, RARE Project is proud to announce the addition of Dean Suhr, MLD Foundation, will be joining the team as COO and Community Development Director.

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