21500 Pacific Coast Highway
Huntington Beach, CA 92648
USA
Honoring those working tirelessly in the fight against rare diseases
WHAT:Global Genes – Allies in Rare Disease, organized in Aliso Viejo in 2008 by its Founder and CEONicole Boice, has become a leading rare disease patient advocacy organization. Under the unifying symbol of hope the Blue Denim Genes Ribbon the grassroots movement has grown to more than 500 supporting organizations.
WHEN:Saturday, September 13, 2014, 5:30p.m. Reception; 6:45 Dinner
WHO:RARE Champions of Hope: Industry Trailblazer:Dr. Moncef Slaoui, Chairman, Global Research & Development and Vaccines, GlaxoSmithKline; Collaborations in Advocacy:Carolyn Levering, President & CEO, The Marfan Foundation;Collaborations in Science:David Altshuler,M.D., Ph.D, Chair, Steering Committee andPeter Goodhand, Executive Director, Global Alliance for Genomics and Health; Public Service:David Williams, President and CEO, Make-A-Wish America. Special Guests:Kit Hoover,Access Hollywood Live, andLisa Hernandez,Access Hollywood;Entertainment:singer/songwriterKris Allen,American IdolSeason 8 winner
WHY:There are more than 7,000 identified rare diseases, with 1 in 10 people in the U.S. affected by them, which translates to a global reach of 350 million people. It lacks a unified voice, with only 15% of rare diseases having organizational and foundation support, and it is estimated that 95% of all rare diseases do not have a single FDA approved drug treatment.
