Global Genes® Announces RARE Champion of Hope Award Recipients to be Honored at RARE Patient Advocacy Summit
RARE Patient Advocacy Summit October 3-4 at Hotel Irvine, Irvine, CA
Aug 07, 2018, 19:24 ET
ALISO VIEJO, Calif., Aug. 7, 2018 /PRNewswire/ -- Global Genes® is pleased to announce the 2018 award recipients that will be honored at the 7th Annual RARE Patient Advocacy Summit (Summit) on Thursday, October 4 at Hotel Irvine in Irvine, California. The Summit is the largest educational event for rare disease patients and advocates worldwide. Offering five specialized learning tracks and led by more than 100 rare disease experts, the event equips and activates those affected by rare disease.
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, teen advocacy, science, medical care and treatment and collaborations. From the extraordinary list of nominees, esteemed panelists selected the recipients to be honored at the special evening reception held following the Summit.
Global Genes® would like to congratulate the following 2018 RARE Champion of Hope award recipients to be honored at the Champions of Hope Awards dinner on October 4, 2018 following the RARE Patient Advocacy Summit:
- RARE Champion of Hope – Teen Advocacy: Kavi Gandhi, Yash Gandhi Foundation
- RARE Champion of Hope – Advocacy: Luke Rosen, KIF1A.ORG
- RARE Champion of Hope – Advocacy: Melissa Hogan, JD, Project Alive
- RARE Champion of Hope – Advocacy: Isabelle Lousada, Amyloidosis Research Consortium (ARC)
- RARE Champion of Hope – Medical Care and Treatment: Jason Sicklick, MD, Moores Cancer Center at the University of California, San Diego
- RARE Champion of Hope – Rising Star: Gabriela DiSalvo, Myofibrillar Myopathy
- RARE Champion of Hope – Collaborations in Science and Technology: Alexion Pharmaceuticals, Rady's Children Institute for Genomic Medicine and Clinithink. Collaborators include Tom Defay, Paul McDonagh, PhD, Sebastien Lefebvre, Margaret Bray, PhD, Narayanan (Ray) Veeraraghaven, PhD, Michelle Clark, PhD, Stephen Kingsmore, DSc, MD, Calum Yacoubian, MD, Richard Gain, MD, Brett Williams, Mary Meskell, Alison Frith
*For more information and details on the above award recipients please visit: globalgenes.org/2018-rare-champions-of-hope-honorees/
More than 30 million people in the United States are living with rare diseases, which equates to 1 in 10 Americans affected by the more than 7,000 rare diseases. The RARE Patient Advocacy Summit is a source of motivation and activation for those families whose lives have been affected by rare disease.
Global Genes® welcomes Presenting Sponsor's PRA Health Sciences and Shire as well as Title Sponsor's Horizon Pharma and Dohmen Life Science Services for the 2018 RARE Patient Advocacy Summit.
To date, Summit Sponsors also include Platinum Sponsors Genentech, Gilead Sciences, Mallinckrodt Pharmaceuticals, Pfizer, Retrophin, Sanofi-Genzyme, Gold Sponsors Abeona Therapeutics, Akcea Therapeutics, Alexion Pharmaceuticals, Alnylam Pharmaceuticals, Amicus Therapeutics, BioMarin, BridgeBio, Novartis Pharmaceuticals Corporation, Novelion Therapeutics, Silver Sponsors Assistance Fund, Atlantic Research Group, Audentes Therapeutics, AveXis, Biogen, Biotechnology Innovation Organization (BIO), Bioverativ, Ionis Pharmaceuticals, Leadiant Biosciences, Ovid Therapeutics, PTC Therapeutics, Recordati Rare Diseases, Regeneron Pharmaceuticals, Sangamo Therapeutics, Sobi, Spark Therapeutics, Strongbridge BioPharma, Ultragenyx Pharmaceutical, Vertex Pharmaceuticals. Other contributing sponsors include Agios Pharmaceuticals, AvroBio, Catalyst Pharma, Codexis, Eloxx Pharmaceuticals, Enzyvant, Illumina, Lumos Pharma, Rhythm Pharmaceuticals, University of Notre Dame Boler-Parseghian Center for Rare and Neglected Disease Voyager Therapeutics and WuXi NextCODE.
It is not too late to become an event sponsor. To learn more about Global Genes® and event sponsorship opportunities please contact Global Genes® at [email protected].
About Global Genes®
Global Genes® is a 501(c)(3) nonprofit organization on a mission to connect, empower and inspire the rare disease community. We provide hope for more than 350 million people affected by rare disease around the globe. Visit globalgenes.org to get involved today.
SOURCE Global Genes