On September 26th, 2015, over 650 attendees from across the globe will gather at the Hyatt Regency Resort and Spa in Huntington Beach, CA, for the fourth annual Tribute to Champions of Hope Gala presented by Global Genes™. The fourth annual RARE Patient Advocacy Summit will take place the two days prior, September 24 – 25. These annual sold-out events bring together rare disease stakeholders including patients, advocates, clinicians, biotech and pharmaceutical executives, rare disease researchers, celebrities and philanthropists.

The fourth annual RARE Patient Advocacy Summit™ helps patient advocates become successful activists and provides the discussion, insights, and tools to move down the advocacy path, equipped and prepared. Some of the 2015 agenda participants include: Grace Whiting, National Alliance of Caregiving, Dr. Gayatri Rao, Director, Office of Orphan Products Development, FDA; Bray Patrick-Lake, Director, Stakeholder Engagement, Clinical Trials Transformation Initiative, Duke University, including Science Briefings from Perlstein Labs, Recursion Pharma and Tute Genomics. The Summit will support 550 attendees, while providing a LiveStream of the event to provide those not able to attend in person, an opportunity to participate. LiveStream will accommodate up to 5,000 remote attendees.

Following the 2-day patient summit, the Tribute to Champions of Hope Gala will celebrate the groundbreaking achievements of individuals and corporations who are leading the fight against rare disease. RARE Champion of Hope awards will be presented in four categories as well as commemorative live performances. Award recipients, additional presentations and performances will be announced in July. This event continues to raise awareness for the over 7,000 different identified rare diseases that affect roughly 30 million Americans and approximately 350 million people worldwide.

Froggy, renowned radio co-host of the widely popular Elvis Duran and the Morning Show, will host the Tribute to Champions of Hope Gala. Froggy is a rare disease patient himself, having been diagnosed with acromegaly in 2010. Since his diagnosis, Froggy has become an avid supporter and advocate for the acromegaly and rare disease community.

Bonner Paddock, RARE Feats of Courage honoree and founder of the OM Foundation® (OMF), which serves children with disabilities, will deliver the opening keynote at this year’s Patient Advocacy Summit, while being recognized at the Tribute to Champions event.

Proceeds from the evening will benefit Global Genes’ educational programs, as well as their first ever ‘Patient Impact Grant ‘program which 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 to their disease communities.

“These events bring together a significant number of the global rare disease community and those that Care About Rare,” Nicole Boice CEO Global Genes stated. “They promote education and best practices, provide a platform to share stories of courage, an opportunity to gain support and most importantly to be inspired. These are some of the most meaningful programs that the Global Genes team has an opportunity to participate in and to offer the rare disease community. It is a time of year that we look always look forward to.”

To date, sponsors of the 2015 Tribute to Champions of Hope Gala and RARE Patient Advocacy Summit include the following organizations: Premiere Sponsors – Alexion, Healthcare at Home, Walgreens, Genzyme, Pfizer and Shire. Other Sponsors include; Aegerion Pharmaceuticals, Abeona Therapeutics, Alnylam Pharmaceuticals Ambry Genetics, Amicus Therapeutics, BIO, Biomarin, Biogen Idec, Boehringer Ingelheim, Everylife Foundation for Rare Diseases, Dohmen Life Science Services, Horizon Pharma, Hyperion, Insmed, Intercept, idis, Jazz Pharmaceuticals, Novartis Oncology, Recordati Rare Diseases, Retrophin, NEA, Raptor Pharmaceuticals, Shire, Sigma-Tau Pharmaceuticals, Synageva BioPharma, and Vertex.

To learn more, 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 within their lifetime. 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.

 

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