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

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.–(BUSINESS WIRE)–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.

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

This year, Global
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.

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, Marathon Pharmaceuticals, Third Rock
Ventures, Voyager Therapeutics, RegenxBio, Illumina and Ultragenyx.

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

About 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.


The ACE Agency
Ashley Eckenweiler, 949-285-9239