Press Releases

Global Genes | RARE Project’s Tribute to Champions of Hope™ Second Annual Benefit to Feature Special Guests

June 13, 2013

YouTube Stars and Universal Records Recording Artists, Cimorrelli, to perform at the event.  Director of the National Institutes of Health, Stephen Groft, to be honored with The Henri Termeer Lifetime Achievement Award

ALISO VIEJO, CA – June 13, 2013 – In the world of rare disease, the champions are those that help to lift the veil of confusion from behind a patient’s eyes.  The time has come to once again recognize those who work to mollify the stigma of genetic disorders, to break down barriers in the race for compelling new research and to pay tribute to the Champions of Hope.

Presented by Global Genes | RARE Project, the second annual Tribute to Champions of Hope Gala will take place on Saturday, September 21st, 2013 in Newport Beach, California.  Awards will be given to commemorate some of the leaders working to advocate for those impacted by rare and genetic disease’s. The event, which will include live entertainment, will be attended by over 420 guests.  This year’s Gala is being presented by Walgreens.

Global Genes | RARE Project is a leading non-profit organization advocating for the roughly 30 million Americans and approximately 350 million people worldwide who are affected by rare and genetic diseases and disorders. In the United States, a disease is considered rare if it affects fewer than 200,000 Americans per disease. According to the National Institutes of Health (NIH), there are nearly 7,000 such rare diseases and an estimated 95% do not have a single approved drug treatment.

Last year’s inaugural gala featured performances by Faircraft Records/Universal Republic recording artist Chris Mann and singer/songwriter Katrina Parker, both fan favorites and stars of the second season of the NBC hit television show “The Voice.” Shwachman-Diamond Syndrome patient, Gracie Van Brunt, also took the stage to perform an original song chronicling her journey as a youth with rare disease. A lifetime achievement award was presented to Henri Termeer, former President and CEO of Genzyme Corporation—the award will go to another deserving recipient this year, in his name.

These awards pay tribute to the key innovators and chief pioneers in the rare and genetic disease community and are given to recipients who are moving research forward and developing new and cutting edge therapies. With millions of patients affected by rare disease, there is no better time than now to pay homage to those who seek to bring change and innovation to this cause.

This year’s award recipients will include:

The Henri Termeer Lifetime Achievement Award

Honoring Dr. Stephen Groft, Director – National Institutes of Health, Office of Rare Disease Research

RARE Champion Award – Advocacy

Rick Guidotti, Founder – Positive Exposures

RARE Champion Award – Patient Driven Science

Josh Sommer, Executive Director – Chordoma Foundation

RARE Champion Award – Advocacy

Dylan Siegel / Jonah Pournazarian, “Chocolate Bar Book” Boys

Entertainment will include Cimorelli, with nearly 500 million views and 2 million subscribers on YouTube, the six sisters of  Cimorelli, have grown their enthusiastic fan base to such a level that when they released their “Believe It” EP in December, it debuted in the Top 10 worldwide on the iTunes charts.  They believe strongly in the mission of Global Genes and hope to lend their support to help elevate the awareness for those challenged by rare disease globally.

More entertainers and celebrity special guests are to be announced soon.

Our current sponsors include: Aegerion, Alexion, Amicus Therapeutics, Auxilium, Bayer, BIO, BioMarin, Celgene, Centric Health Resources, FK Health, Genzyme, Glaxo Smith Kline, Idis, Illumina, Intermune, McLaren, Novartis, Patient Crossroads, PatientsLikeMe, Patient Services Inc, Pfizer, PhRMA, Raptor, Sarepta Therapeutics, Shire, Sigma Tau, Siren Interactive, Synageva, Vanda Pharmaceuticals, Vertex, Vidara Therapeutics, ViroPharma, Walgreens, Watson Land Company.

For more information about the event or how to become a sponsor, you can visit us online.

About Global Genes | R.A.R.E. Project

Global Genes | RARE Project a leading rare and genetic disease patient advocacy organization worldwide. The non-profit organization promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™.  The organization’s mission emphasizes increasing rare disease awareness, public and physician education, building community through social media and supporting research initiatives to find treatments and cures for rare and genetic diseases. Website:; Twitter: @GlobalGenes.