This year’s events will present another star-studded weekend of multiple celebrity guest appearances in support of rare disease including Parks and Rec star Jim O’Heir, star of MTV’s Awkward Jillian Rose Reed, Scout Compton from Nashville and Halloween 2, and Karan Brar from Disney Channel’s Jessie and Bunk’d.
Global Genes ambassador and rare disease advocate, Madison McLaughlin, actress from CW’s Arrow and Supernatural, will host the Friday night Champion of Hope award show. Madison strives to create awareness, raise funds, and form a community for those affected by rare disease like her three sisters diagnosed with HBSL. Co-host of 104.3 MYfm’s Valentine in the Morning, Jillian Escoto, will host the Saturday night Tribute award show. Jillian is active in supporting The National Multiple Sclerosis Society after being diagnosed with MS in 2008.
The Tribute award show will kick-off with a performance by 8-year old singer Gavin Stevens, who touched hearts across America with his performance on NBC’s Little Big Shots. Season 12 contestant of NBC’s The Voice, Stephanie Rice, will perform; and viral sensation, patient advocate, and award honoree, Sparsh Shah, will join the line-up of entertainment with his inspirational musical performance and motivational message, that will impact everyone in attendance. To purchase tickets to the Tribute visit globalgenes.org/2017tribute.
The 6th Annual RARE Patient Advocacy Summit will take place prior to the Tribute to Champions of Hope September 14 – 15 and is an educational conference offering a space for members of the rare disease community to learn, share best practices, create important connections, and help catalyze powerful collaborations, all in an effort to support forward movement in rare disease. To register to attend the Summit please register at globalgenes.org/2017summit. The two-day event brings rare advocates from across the globe together culminating with the Tribute award show on Saturday, September 16.
To date the Summit sponsors include: PRA Health Sciences, Shire, Horizon Pharma, Alexion Pharmaceuticals, Genentech, Mallinckrodt Pharmaceuticals, Amicus Therapeutics, Inc., Dohmen Life Sciences Services, Novartis, EMD Serono Inc., Novartis Pharmaceuticals, Pfizer Inc., Retrophin, Inc., Sanofi Genzyme, Ultragenyx Pharmaceuticals, AveXis Inc., Audentes Therapeutics, Inc., Biogen, BioMarin Pharmaceuticals Inc., Illumina, Intercept Pharmaceuticals, Insmed Inc., Jazz Pharmaceuticals, Leadiant Biosciences, Novelion Therapeutics, Vertex Pharmaceuticals Inc., Abeona Therapeutics, Agios Pharmaceuticals, Akcea Therapeutics, Alnylam Pharmaceuticals, Barrow Neurological Institute, Biotechnology Industry Organization, BridgeBio, GenePeeks, Prometic Life Sciences, PTC Therapeutics, Recordati Rare Diseases, Regeneron Pharmaceuticals, Sobi, Spark Therapeutics, Strongbridge Biopharma, Teva Pharmaceuticals, and Child Neurology Foundation.
To date the Tribute sponsors include: PRA Health Sciences, Horizon Pharma, Amicus Therapeutics, Inc., Sanofi Genzyme, Walgreens, Healthcare at Home, Retrophin, Inc., Vertex Pharmaceuticals Inc., Akcea Therapeutics , Audentes Therapeutics, Inc., AveXis, Inc., Biogen, BioMarin Pharmaceutical Inc., Catalyst Pharmaceuticals, Dohmen Life Science Services, EMD Serono, Inc., Genentech, Illumina, Jazz Pharmaceuticals, Leadiant Biosciences, Mallinckrodt Pharmaceuticals, Novartis Pharmaceuticals, Novelion Therapeutics, Recordati Rare Diseases and Strongbridge Biopharma.
About Global Genes®
Guided by its mission to eliminate the challenges of rare disease, Global Genes® is a leading rare disease patient advocacy organization with worldwide reach that serves and promotes the needs of patients and families touched by rare and genetic diseases. Since 2009, under the unifying symbol of HOPE and the Blue Denim Genes Ribbons®, Global Genes® has been building awareness, developing patient-focused education and advocacy tools, and funding patient care programs and early investigative research. For more information visit www.globalgenes.org. Join the RARE conversation! Follow @GlobalGenes on social media.
About Horizon Pharma
Horizon Pharma plc is a biopharmaceutical company focused on improving patients’ lives by identifying, developing, acquiring and commercializing differentiated and accessible medicines that address unmet medical needs. The Company markets 11 medicines through its orphan, rheumatology and primary care business units. Visit the RAREis Instagram page to learn more about Horizon’s efforts to elevate the faces and stories of the rare disease community. For more information about Horizon, visit www.horizonpharma.com. Follow @HZNPplc on Twitter or view careers on our LinkedIn page.
About PRA Health Sciences
PRA is one of the world’s leading global CROs by revenue, providing outsourced clinical development services to the biotechnology and pharmaceutical industries. PRA’s global clinical development platform includes more than 70 offices across North America, Europe, Asia, Latin America, South Africa, Australia and the Middle East and over 13,300 employees worldwide. Since 2000, PRA has performed approximately 3,500 clinical trials worldwide. PRA has participated in the pivotal or supportive trials that led to FDA or international regulatory approval of more than 70 drugs. To learn more about PRA, visit www.prahs.com.