ALISO VIEJO, Calif. — August 25, 2015 — Global Genes™ is pleased to announce celebrities, iconic athletes and pop stars that will be joining the 4th Annual RARE Tribute to Champions of Hope gala on September 26, 2015 at the Hyatt Regency Huntington Beach Resort and Spa in Huntington Beach, CA. The annual blue carpet event honors scientists, advocates, patients and supporters who are leading the fight against rare disease.
The 2015 gala will be a star-studded event with award presentations by multi-Emmy nominated actress, Chandra Wilson (ABC’s Grey’s Anatomy), actress and producer Lindsey Shaw (Pretty Little Liars), TV personality and broadcast journalist, Kit Hoover (Access Hollywood LIVE), and 11x Ironman champion and Pan Am Games winner, Lisa Bentley. The evening’s program will include a special performance by winner of the 2015 Macy’s iHeart Radio Rising Star Contest, Christina Grimmie.
Many special celebrity guests are expected to attend the gala in support of rare disease including Emmy nominee, Jason Ritter (Gravity Falls, Girls), American Idol season 8 winner and Platinum Recording artist, Kris Allen, philanthropist, author and actor Travis Flores, and many more still to be announced. Rare disease patient advocate and syndicated radio talk show host, Scot “Froggy” Langley will be the master of ceremony for the evening of festivities.
The 4th Annual RARE Patient Advocacy Summit™ will take place the two days prior to the gala, September 24 – 25. The Summit assists patient advocates in becoming successful activists and offers support to help navigate their rare disease journey. Notable individuals and organizations participating on the 2015 summit agenda include: Grace Whiting, National Alliance for Caregiving, Dr. Gayatri Rao, Director, Office of Orphan Products Development, FDA, David Glazer, Google Genomics, Brae Patrick-Lake Director, Stakeholder Engagement, Clinical Trials Transformation Initiative, Duke University, including Science Briefings from Perlstein Labs, Recursion Pharma and Tute Genomics.
“We are so honored and humbled by all of the incredible individuals and organizations that are supporting the fight against rare disease at this year’s gala and summit,” Nicole Boice, CEO Global Genes commented. “The global rare disease community is so strong and proves that great feats can be achieved by coming together, taking action and truly believing.”
The gala and summit annually raise awareness for over 7,000 different types of rare diseases that affect roughly 30 million Americans and approximately 350 million people worldwide. Proceeds from the evening will benefit Global Genes’ educational programs, as well as the organization’s new Patient Impact Grant program. The program offers support groups and charities that care for patients affected by rare disorders the opportunity to secure funding for projects that make a tangible difference in their disease communities.
To date, sponsors of the 2015 RARE Tribute to Champions of Hope Gala and RARE Patient Advocacy Summit include the following organizations:
Alexion, Amicus, Healthcare at Home, Walgreens, Genzyme and Shire.
Other Sponsors include:
Aegerion Pharmaceuticals, Abeona Therapeutics, Alnylam Pharmaceuticals, Ambry Genetics, Audentes, BIO, BioMarin, Biogen, Counsyl, Dohmen Life Science Services, Every Life Foundation for Rare Diseases, GSK, Horizon Pharma, Illumina, Insmed, Intercept, Idis, Invitae, Jazz Pharmaceuticals, New Enterprise Associates, Novartis Oncology, Pfizer, Recordati Rare Diseases, Retrophin, Raptor Pharmaceuticals, SERMO, Shire, Sigma-Tau Pharmaceuticals, Ultragenyx and Vertex.
About Global Genes – Allies in Rare Disease
Global Genes is a leading global rare disease patient advocacy organization. The group’s mission is to eliminate the challenges of rare disease. They build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.