News Column

Global Genes Hosts Third Annual Tribute to Champions of Hope Gala

July 10, 2014

Announces evening award recipients honoring the pioneering achievements of individuals and corporations in the rare disease community



ALISO VIEJO, Calif.--(BUSINESS WIRE)-- On September 13th, 2014, over 600 attendees will gather at the Hyatt Regency Resort and Spa in Huntington Beach, CA, for the third annual Tribute to Champions of Hope Gala, hosted by Global Genes™. This annual sold-out event brings together rare disease stakeholders including patients, advocates, biotech and pharmaceutical executives, rare disease researchers, celebrities, and philanthropists.

The Tribute to Champions of Hope Gala celebrates the pioneering achievements of individuals and corporations in the rare and genetic disease community who are leading the fight against rare disease. This event continues to raise awareness for the 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 innovative Undiagnosed Patient Program, which aims to support the start of the rare disease journey for undiagnosed patients through direct funding for complex diagnostics, including genome sequencing.

Global Genes is pleased to announce the evening award recipients:

  • RARE Champion of Hope– Industry Trailblazer, Dr. Moncef Slaoui, Chairman, Global Research & Development and Vaccines, GlaxoSmithKline.Moncef Slaoui has led the transformation and commitment to rare disease within one of the world’s largest pharmaceutical companies. Because of his leadership, over 50 rare disease therapies are now in development. He is a true champion for rare disease, and a symbol of what steadfast commitment, desire and smarts can accomplish for a community in need.
  • RARE Champion of Hope – Collaborations in Advocacy, Carolyn Levering, President & CEO, The Marfan Foundation. Led by Carolyn Levering, The Marfan Foundation is a best-in-class example of collaboration in advocacy. The Marfan Foundation in conjunction with Univision, Mayo Clinic, and the Larson Family, set out to expand their reach and spread their message to the Spanish-speaking community. Through this partnership, they created an entire pilot program that included extensive national and local broadcast, print, and online media coverage, materials for the Spanish-speaking community, and a Spanish-language track at the Foundation’s Annual Family Conference in Los Angeles in August 2013. This collaboration brought together an advocacy organization, a large media company, a leading medical institution, and a family to reach an under-served segment of their patient population in a much more interactive way.
  • RARE Champion of Hope – Collaborations in Science, David Altshuler, M.D., Ph.D., Chair, Steering Committee and Peter Goodhand, Executive Director, Global Alliance for Genomics and Health (GAGH). Spearheading the creation and development of the GAGH in 2013, they have together established the first collaborative organization to enable the sharing of genomic and clinical data to help unlock potential advancements in medicine and science. Today, the GAGH is comprised of more than 193 partner organizations based in 28 countries including healthcare, biomedical research, disease and patient advocacy, life science and information technology.
  • RARE Champion of Hope – Public Service, David Williams, President and CEO, Make-A-Wish® America. Make-A-Wish grants the wishes of children diagnosed with life-threatening medical conditions, many of which are rare diseases--enriching their lives and bringing hope. Last year alone, Make-A-Wish granted the most heartfelt wishes of more than 14,000 children throughout the United States and its territories. David Williams is raising the bar at this organization, which has the bold vision to grant every eligible child’s wish.

    “We are always humbled this time of year when we bring together advocates and scientists who are leading efforts in the fight against rare disease,” said Nicole Boice, CEO of Global Genes, “There is always more work to be done, but this event gives us the opportunity to honor and recognize those who are innovating, inspiring and teaching all of us what it really means to be a Champion.”

    Global Genes will also be hosting the Third Annual RARE Patient Advocacy Summit™ in conjunction with the Tribute to Champions of Hope Gala, September 11-12, 2014, which raises funds and awareness for rare diseases. The purpose of the RARE Patient Advocacy Summit is to help patient advocates become successful activists and provide the discussion, insights, and tools to move down this advocacy path, equipped and prepared. Some of this year’s partners include FasterCures, Health 2.0, Caregiver Action Network and Smart Patients. This event will also be available to view via Livestream, in real-time, for those who cannot attend in person.

    To date, sponsors of the 2014 Tribute to Champions of Hope Gala and RARE Patient Advocacy Summit include the following organizations: Walgreens, Alexion, Pfizer, Shire, Genzyme, Vidara, BIO, AstraZeneca, Raptor, Recordati Rare Diseases, Amicus Therapeutics, Jazz Pharmaceuticals, Sigma-Tau Pharmaceuticals and Sarepta Therapeutics.

    To learn more, register for these events, or for sponsorship opportunities, please visit www.globalgenes.org/events

    About Global Genes – Allies in Rare Disease

    Global Genes is a leading rare disease patient advocacy organization. The group’s mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections to people and resources, and through investment in technologies that will positively impact affected patients and families. 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.





    Global Genes

    Christina Fumia, 949-248-7273

    christinaf@globalgenes.org

    Source: Global Genes


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