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

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

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

PR Newswire

ALISO VIEJO, Calif., April 1, 2013

ALISO VIEJO, Calif., April 1, 2013 /PRNewswire-USNewswire/ --The Global Genes
| RARE Project (www.globalgenes.org), 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.

(Logo: http://photos.prnewswire.com/prnh/20130401/DC86106LOGO )

"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
www.globalgenes.org/2013nominate. All award nominations will be reviewed by a
specially appointed committee. Award categories include:

  oRARE 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.
  oRARE 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.
  oRARE 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 www.globalgenes.org/2013gala.

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
http://www.globalgenes.org
Visit us on Facebook at https://www.facebook.com/globalgenesproject
Visit us on Twitter: @GlobalGenes

SOURCE Global Genes | RARE Project

Website: http://www.globalgenes.org
 
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