Geena Russo, The ACE Agency
(860) 919-6850, Geena@theaceagency.com
ALISO VIEJO, Calif. — Global Genes is pleased to announce the celebrities and special guests joining in the fight against rare disease at the 7th Annual RARE Champions of Hope Celebration taking place the evening of October 4, 2018, at Hotel Irvine in Irvine, California. The annual blue carpet event will follow the two-day RARE Patient Advocacy Summit, the largest educational event for rare disease patients and advocates worldwide, to honor and celebrate rare disease patients and advocates.
Global Genes ambassador and rare disease advocate from FOX11 and Good Day LA, Maria Quiban, will host the Thursday night RARE Champions of Hope Celebration. Quiban is a passionate advocate who proudly utilizes her platform to campaign for those affected by rare disease. After losing her husband to an 18-month long battle with Glioblastoma, a rare brain cancer, in December 2015; Quiban became a champion for caregivers, recently briefing senators and policy makers on Capitol Hill with Global Genes and National Alliance for Caregiving.
The Thursday night award show will kick-off with a performance by pop artist Cameron James, who touched hearts across America with her song “All Out War” featured in ABC’s Quantico. Cameron is a rare disease patient herself, as well as her husband and her daughter, who have Atypical Hemolytic Uremic Syndrome (AHUS). James co-wrote American Idol alum, Danny Gokey’s, radio single “The Comeback” inspired by her daughter’s rare disease journey. 2013 Rare Champion of Hope Patient Advocacy Award recipient and singer-songwriter, Gracy Van Brunt, will perform her new song “Left for Dead”, released on World Rare Disease Day 2018.
This year’s awards will present another star-studded evening of multiple celebrity guest appearances in support of rare disease including Global Genes ambassador and rare disease advocate, Madison McLaughlin, actress from CW’s Arrow and Supernatural, and Brooke Lewis, philanthropist and actress from Breaking Dating and Scream Queen.
More than 30 million people in the United States are living with rare diseases, which equates to 1 in 10 Americans affected by the more than 7,000 rare diseases. Global Genes’ RARE Patient Advocacy Summit is a source of motivation and activation for the families whose lives have been affected by rare disease. Annually, corporate stakeholders attend the event to become immersed in rare disease advocacy and gain valuable knowledge on patient and caregiver perspectives.
Global Genes® is pleased to welcome Presenting Sponsors: PRA Health Sciences and Shire; and Title Sponsors: Horizon Pharma and Dohmen Life Science Services for the 2018 RARE Patient Advocacy Summit.
To date, Summit Sponsors include Platinum Sponsors Genentech, Gilead Sciences, Mallinckrodt Pharmaceuticals, Pfizer, Retrophin, Sanofi-Genzyme, Gold Sponsors Abeona Therapeutics, Akcea Therapeutics, Alexion Pharmaceuticals, Alnylam Pharmaceuticals, Amicus Therapeutics, BioMarin, BridgeBio, Novartis Pharmaceuticals Corporation, Novelion Therapeutics, Silver Sponsors Assistance Fund, Atlantic Research Group, Audentes Therapeutics, AveXis, Biogen, Biotechnology Innovation Organization (BIO), Bioverativ, Ionis Pharmaceuticals, Leadiant Biosciences, Ovid Therapeutics, PANTHERx Specialty Pharmacy, PTC Therapeutics, Recordati Rare Diseases, Regeneron Pharmaceuticals, Sangamo Therapeutics, Sobi, Spark Therapeutics, Strongbridge BioPharma, Ultragenyx Pharmaceutical, Vertex Pharmaceuticals. Other contributing sponsors include Agios Pharmaceuticals, AvroBio, Catalyst Pharma, Codexis, Eloxx Pharmaceuticals, Enzyvant, Everylife Foundation for Rare Diseases, Illumina, Lumos Pharma, Rhythm Pharmaceuticals, University of Notre Dame Boler-Parseghian Center for Rare and Neglected Disease Voyager Therapeutics and WuXi NextCODE.
About Global Genes®
Global Genes is a 501(c)(3) nonprofit organization on a mission to connect, empower and inspire the rare disease community. We provide hope for more than 350 million people affected by rare disease around the globe. To date, we’ve educated 6 million people in 100 countries about rare disease, equipped 30,000 patients and advocates with tools and resources, and provided $400,000 in support for innovative patient impact programs. This is just the beginning of what we can achieve together. Visit globalgenes.org to get involved today.