Press Releases

Dr. Stephen Groft, NIH Director, To Receive Lifetime Achievement Award For His Leadership In Advancing Research Into Rare and Genetic Diseases

April 1, 2013

Award to be Presented at RARE Tribute to Champions of Hope™ Annual Event; RARE Champions of Hope™ Award Nominations Now Being Accepted in the Categories of Advocacy, Medical Caregiving, and Science

ALISO VIEJO, CA April 1, 2013 –  The Global Genes | RARE Project (, its Board of Directors and Honorary Advisory Board are proud to announce that Dr. Stephen C. Groft, Director, National Institutes of Health, Office of Rare Disease Research, will be honored as the first recipient of the Henri Termeer Lifetime Achievement Award for his nearly 30 years of service and commitment to advancing research and treatments for the millions of people afflicted with rare and genetic diseases. The award will be presented to Dr. Groft at the 2nd Annual RARE Tribute to Champions of Hope™ Gala taking place at the Balboa Bay Club & Resort on Saturday, September 21, 2013, in Newport Beach, California.

“Dr. Groft is one of the original pioneers in the rare disease arena and is recognized worldwide as a leader in building collaborative relationships to improve patient treatment and care,” said Barbara Wuebbels, Associate Director Patient Advocacy and Investor Relations, BioMarin.  “He has worked on both a national and global level towards increasing awareness and advancing research into orphan diseases and empowering patient advocacy organizations and patients alike. No one is more deserving of receiving this year’s Lifetime Achievement Award than Dr. Groft.”

At the 1st annual RARE Tribute to Champions of Hope™ event held in 2012, more than 400 guests were in attendance to celebrate the pioneering achievements of individuals and corporations in the rare and genetic disease community.  The sold out event brought together rare disease stakeholders including patients, patient advocates, biotech and pharma executives, rare disease researchers, celebrities, professional athletes and philanthropists. Attendees were inspired by incredible stories of triumph and courage and were entertained throughout the night by special musical performances by leading recording artists including Chris Mann (Faircraft Records/Universal Republic), singer-songwriter Katrina Parker from NBC’s hit show “The Voice,” and recording artist and “American Idol” season 5 finalist, Elliott Yamin.

The 2nd annual RARE Tribute to Champions of Hope™ event will once again raise awareness for the nearly 7,000 different types of rare and genetic diseases that afflict roughly 30 million Americans and approximately 300 million people worldwide.  The annual event is designed to bring together various stakeholders who Care About Rare™, while honoring many individuals from the rare disease community who are working tirelessly to advocate for the millions of patients and their families affected by rare and genetic diseases.

“The RARE Tribute to Champions of Hope™ Gala is a unique event that recognizes inspiring individuals who are working outside the box, innovating, and advocating for the millions of people impacted by rare and genetic diseases,” said Nicole Boice, President, Global Genes| RARE Project.  “It’s a special time where we unite as a community and bring together new supporters and advocates to become part of this global movement.”

Early sponsors of the 2013 RARE Tribute to Champions of Hope™ event include the following organizations: Alexion, Amicus Therapeutics, Bayer, BIO, BioMarin, Feinstein Kean Healthcare, Genzyme, Idis, Intermune, Pfizer, Shire, Sigma Tau, Vidara, Viropharma, and Watson Land.  To learn more about sponsorship opportunities, download an overview package of information here.

RARE Champions of Hope™ Award Nominations

Global Genes | RARE Project is accepting RARE Champions of Hope™ award nominations starting today and thru May 10, 2013.  To make an online award nomination to recognize someone special in the rare disease community, visit All award nominations will be reviewed by a specially appointed committee.  Award categories include:

  • RARE Champion of Hope™ Award, Medical Care & Treatment – Recognizing an individual that goes above and beyond in clinical care and treatment for a rare disease patient, family or the community at large.  Someone who engages with a patient/family with a rare disease to optimize care and treatment. This person could be a doctor, nurse or special care provider.
  • RARE Champion of Hope™ Award, Science – Recognizing an individual who is moving the bar in rare disease research and science. Whether from academia, industry, the clinic, or an advocacy group, this person works to advance research for a specific rare disease or is a key change agent in the provision of tools and approaches to developing and/or delivering more effective treatments for the rare community.
  • RARE Champion of Hope™ Award, Collaborations in Advocacy and Collaborations in Science – In order to advance efforts related to advocacy and research, collaborations are critical.  We are honoring organizations and individuals who see the importance and value in collaborating around a cause or specific area of rare disease research.  Submissions must include the names of all parties included in the collaboration.

For more information about the RARE Tribute to Champions of Hope™ event or to nominate a RARE champion, visit us at

About Global Genes | RARE Project

Global Genes | RARE Project is a leading rare and genetic disease patient advocacy organization. Global Genes works to build and unify a global rare and genetic disease community and positively impact patients in their lifetime by offering programs designed to educate, empower, and support patients, advocates, foundations, and other rare disease focused organizations.

For more information on Global Genes | RARE Project, visit our website at

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Visit us on Twitter: @GlobalGenes.


Carrie Ostrea

Marketing Director

[email protected]