Global Genes Hosts 5th Annual Rare Patient Advocacy Summit and Tribute to Champions of Hope, Presented by PRA Health Sciences.

June 20, 2016

September 22 to 24, 2016, Hyatt Regency Resort and Spa, Huntington Beach, California.

The annual blue carpet event following the two-day patient summit honors scientists, advocates, and patients who are leading the fight against rare diseases and rare genetic disorders.   

ALISO VIEJO, Calif. – June 16, 2016 – On September 24, 2016, over 700 attendees from around the globe will gather at the Hyatt Regency Resort and Spa in Huntington Beach, California, for the fifth annual Global Genes Tribute to Champions of Hope (Tribute) presented by PRA Health Sciences. The Tribute is preceded by the fifth annual RARE Patient Advocacy Summit (Summit) to be held on September 22 – 23, at the same location. These annual events bring patients, advocates, clinicians, biotech and pharmaceutical company leaders, rare disease researchers, celebrities, and philanthropists together for a motivational weekend.

The 2015 Tribute to Champions of Hope was a sold out success. Bryce Dallas Howard, Jurassic World, and Kit Hoover, Access Hollywood Live, were among the many celebrity supporters to celebrate and honor the fight against rare disease. Attendees witnessed Ben Lou’s extraordinary performance of “Titanium” accompanied by platinum recording artist, Kris Allen. Lou, then 12, moved the audience to tears as he sang in a reclined position due to his Spinal Muscular Atrophy (SMA). In addition to the night’s touching performances, the Tribute was marked by awarding 15 RARE Champions of Hope.

This year, Global Genes continues to celebrate the groundbreaking achievements of individuals and corporations who are leading the fight against rare diseases and rare genetic disorders. Global Genes’ Tribute to Champions of Hope recognizes those who are uniquely attacking the challenges faced in the fight against rare diseases and rare genetic disorders; those who are thinking outside of the box and working tirelessly; not those focusing on what was, but those who set their sights on what is possible. The RARE Champions of Hope awards will be presented in six categories, including Collaborations in Science and Technology, Advocacy, Teen Advocacy, Collaborations in Advocacy, Science, and Medical Care and Treatments. Award recipients will be announced in June.

Scot “Froggy” Langley, co-host of the widely popular Elvis Duran and the Morning Show, will return as Master of Ceremonies. Langley is an avid supporter and advocate for the acromegaly and rare disease community. Global Genes has planned an exciting lineup of entertainment, as well as a very special presentation by Chive Charities and Global Genes, as part of this year’s Tribute. Help support the rare disease community by purchasing tickets or sponsoring the Tribute. Visit to learn more.

Members of the rare disease community are encouraged to also attend the fifth annual RARE Patient Advocacy Summit September 22 – 23, preceding the Tribute. Over 75 speakers will share on a variety of subjects ranging from funding early research, developing a treatment, to advocating in rare diseases. Phil Reilly, MD, JD will have a book signing and discussion of Orphan: The Quest to Save Children with Rare Genetic Disorders. Mango Habanero, a San Diego world music band, will entertain guests at the Summit’s Friday evening reception on September 23. The Summit aims to educate and celebrate the 30 million Americans and 350 million global citizens affected by rare genetic diseases. Rare disease patients can apply for a travel stipend to attend the event. Visit to register.

“There is nothing quite like the Tribute to Champions of Hope and the RARE Patient Advocacy Summit. This is a very special time for rare disease patients and advocates where they learn, share, support, and connect with each other through meaningful sessions, presentations and personal interactions. The impact that they have on our community is tremendous,” states Nicole Boice, Founder and CEO, Global Genes.

Global Genes is pleased to welcome PRA Health Sciences as the presenting sponsor for the 2016 Tribute to Champions of Hope. Since 2011, PRA has successfully managed over 160 rare disease trials in 11 therapeutic areas and has contributed to the successful market approval of 14 drugs. “While some diseases may be rare, hope for appropriate treatment doesn’t have to be,” says Kent Thoelke, Executive Vice President, Scientific and Medical Affairs, Safety and Commercialization Services.  “PRA is excited to partner with Global Genes as both our organizations share a passion to accelerate rare disease clinical development. At PRA, we are committed to finding flexible, creative, and innovative solutions to meet the needs of rare disease patients.”

Proceeds from the evening will benefit Global Genes’ educational programs and the RARE Patient Impact Grant program, which was launched at last year’s Tribute. With these programs, Global Genes funded $100,000 in financial support to 18 deserving foundations and patient groups. Global Genes is determined to provide equipment, resources, and support to rare disease patients and their caregivers.  Grant recipients were selected from a pool of 137 applicants, with requests totaling over $1.4 million. This year Global Genes hopes to increase grant funding to $125,000 or more. “Our goal is to fund more opportunities for grants that directly support rare families. It is that simple,” says Boice.

Presenting sponsor: PRA Health Sciences

To date the events’ sponsors include: Platinum Sponsors: Alexion Pharmaceuticals, Horizon Pharma, Genentech and Walgreens. Additional sponsorships provided by: Retrophin, Raptor, Genzyme, Amicus, Shire, Healthcare at Home, Pfizer, Novartis, Vertex, BioMarin, Mallinckrodt, Recordati Rare Disease, Inc, Biogen Idec, Teva Pharmaceuticals, Abeona Therapeutics, Chiasma Pharmaceuticals, Ambry Genetics, Akcea Therapeutics, Bluebird Bio, Janssen, Sigma Tau, Cambridge BioMarketing, Alnylam, Dohmen Life Sciences Services, BIO, Glaxo Smith Kline (GSK), Jazz Pharmaceuticals, IDIS, Third Rock Ventures, Voyager Therapeutics, RegenxBio, Marathon Pharmaceuticals,  Illumina and Ultragenyx.


It is not too late to become an event sponsor. To learn more about Global Genes and event sponsorship opportunities, visit




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About Global Genes

Global Genes is a leading rare genetic disease advocacy organization. We work to eliminate rare disease challenges by building awareness, developing patient-focused educational tools, and funding patient care programs and early investigative research. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes is dedicated to connection. We unite experts, advocates and patients of all ages. Together, we actively seek treatments and cures for the 7,000+ rare genetic diseases that affect 30 million Americans and over 350 million people worldwide.

About PRA Health Sciences

PRA is one of the world’s leading global contract research organizations, by revenue, providing outsourced clinical development services to the biotechnology and pharmaceutical industries. PRA’s global clinical development platform includes approximately 70 offices across North America, Europe, Asia, Latin America, South Africa, Australia, and the Middle East, and 12,000+ employees worldwide. Since 2000, PRA has performed approximately 3,300 clinical trials globally and has worked on more than 100 marketed drugs across several therapeutic areas. In addition, PRA has participated in the pivotal or supportive trials that led to U.S. Food and Drug Administration or international regulatory approval of more than 60 drugs. To learn more about PRA, please visit

About Chive Charities

Chive Charities is a 501(c)(3) non-profit organization, which inspires a new generation to champion orphaned causes in need of public awareness and financial assistance.




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