Global Genes Announces RARE Champion of Hope Award Recipients to be Honored at 6th Annual RARE Tribute and Patient Advocacy Summit


Over 200 individuals and organizations worldwide were nominated by their peers for a RARE Champion of Hope award for their notable efforts in rare disease advocacy, science, collaborative sciences, medical care and treatment. From the extraordinary list of nominees, members from the Global Genes Board of Directors, Medical and Science Advisory Board, and other key partners selected the recipients to be honored at the 6th annual Tribute event.

Global Genes would like to congratulate the following 2017 RARE Champion of Hope award recipients:

RARE Champion of Hope – Teen Advocacy: Taylor Kane (Run for ALD) RARE Champion of Hope – RARE Disease Awareness: Claire Wineland (Claire’s Place Foundation) RARE Champion of Hope – Advocacy: Sparsh Shah, “PURYTHM”, 13-year-old child prodigy, singer, songwriter and rapper RARE Champion of Hope – Advocacy: Penny Howard (Hope4Harper) RARE Champion of Hope – Advocacy: Kevan Chandler, Ben Duvall, Philip Keller, Tom Troyer, Luke Thompson (We Carry Kevan) RARE Champion of Hope – International Advocacy: Anne Lawlor (22q11 Ireland) RARE Champion of Hope – Innovation: Millan Patel, M.D. (Rare Disease Foundation) RARE Champion of Hope – Innovation: Annette Bakker, Ph.D. (Children’s Tumor Foundation) RARE Champion of Hope – International Medical Care and Treatment: Colin Steward, Ph.D. (National Health Service Barth Syndrome Service, Bristol Royal Hospital for Children, UK) RARE Champion of Hope – Medical Care and Treatment: Antonie Kline, Medical Director, CdLS Foundation and Director of Pediatric Genetics, Greater Baltimore Medical Ctr. (Cornelia de Lange Syndrome Foundation)

*For more information and details on the above award recipients please visit:

Proceeds from the evening will benefit Global Genes’ educational programs and the RARE Patient Impact Grant program, which was launched at the 2015 Tribute.

Title Sponsors: Horizon Pharma, Shire, PRA Health Sciences (both events)

To date the Summit sponsors: 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: 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.

To learn more about Global Genes, event sponsorship opportunities, and the Tribute and Summit visit

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SOURCE Global Genes

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