You’re Invited to the RARE Champion of Hope Awards

August 9, 2018

Dear Victor Norberto, It’s our favorite time of year when the community gathers to celebrate and recognize rare disease champions for their extraordinary efforts on behalf of the rare community. Congratulations to all RARE Champion of Hope nominees, and a special thanks to those who were chosen as this year’s honorees! The 2018 RARE Champions of Hope honorees include: ● Teen Advocacy: Kavi Gandhi, Yash Gandhi Foundation ● Advocacy: Luke Rosen, KIF1A ● Advocacy: Melissa Hogan, JD, Project Alive ● Advocacy: Isabelle Lousada, Amyloidosis Research Consortium (ARC) ● Medical Care and Treatment: Jason Sicklick, MD, Moores Cancer Center at the University of California, San Diego ● Rising Star: Gabriela DiSalvo, Myofibrillar Myopathy ● Collaborations in Science and Technology: Alexion Pharmaceuticals,          Rady Children's 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 and Alison Frith. The Awards celebration and dinner is complimentary for everyone registered for the RARE Patient Advocacy Summit. If you haven’t yet registered for the Summit taking place October 3 – 4 in Irvine, California, please do so today. This is a special event you won’t want to miss! Date: Thursday, October 4, 2018 Time: 5 – 10pm Location: Hotel Irvine in Irvine, California We look forward to honoring these exceptional RARE Champions of Hope with you! Register Now!

Limited Hotel Rooms Remain: Book Yours Today Rooms are filling fast at Hotel Irvine where the Summit will be held. Be sure to reserve your room on location here today! RARE Champion of Hope Awards Are you unable to attend the Summit but would like to be part of the award celebration on Thursday, October 4? Reserve your seat for the awards dinner here. Don't Miss Out The RARE Patient Advocacy Summit is the largest gathering of rare disease patients and advocates of its kind. Check out a short video clip of the 2017 Summit to get a feel for what the Summit excitement is all about.

Global Genes is a leading rare disease patient advocacy organization whose purpose is to connect, empower, and inspire the rare disease community. Global Genes® 28 Argonaut, Suite 150 Aliso Viejo, CA 93306 globalgenes.org | Tax ID: 26-3331487