Registration Opens TODAY for the 2018 RARE Patient Advocacy Summit

This is the April edition of the 2018 Global Genes Newsletter, your source for RARE news.

APRIL 1, 2018

THE 2018 RARE PATIENT ADVOCACY SUMMIT Join Global Genes and our partners for the 2018 RARE Patient Advocacy Summit, the largest gathering of rare disease patients, advocates, caregivers, and industry experts worldwide!  This year, the Summit offers four specialized learning tracks to help you spark change including: Living with a life-altering condition, before and after diagnosis Becoming successful architects of your health and that of your disease community Building on advances as a patient, partner, and driver in drug development Learning about the latest science and technology that drive innovation Join us we equip the rare disease community with tools and resources that will empower them to thrive on the road ahead! Click here for more information and to register. REGISTER FOR RARE ON THE ROAD  Global Genes and the EveryLife Foundation are excited to partner for RARE on the Road, a Rare Disease Leadership Tour to bring critical education and insights to rare disease patients, caregivers and other advocates. We are uniting to build and activate the rare disease community at the local level. Whether you’re new to the rare disease community or a “seasoned veteran” this workshop will benefit you! Join us:  June 9th, 2018 in Houston, TX June 30th 2018 in Salt Lake City, UT July 21st 2018 Nashville, TN  Click here to register! RARE DISEASE AWARENESS SPOTLIGHT Let’s raise awareness for these disease communities who hold their Disease Awareness Month in April: Autism Awareness Sarcoidosis *Sarcoidosis Foundation of Long Island Adrenal Insufficiency *Adrenal Insufficiency United Undiagnosed Awarenes *The Undiagnosed Diseases 4p- and Wolf-Hirschhorn syndrome *4p- Support Group * Contact these Global Genes Foundation Alliance members for disease information

REGISTER AND APPLY FOR 2018 RARE PATIENT ADVOCACY SUMMIT SCHOLARSHIPS Registration is now open for the 10th annual RARE Patient Advocacy Summit, and we're accepting applications for travel scholarships! Register now to receive your earlybird pricing and secure your spot for limited travel scholarship! REGISTER NOW! NOMINATE A RARE CHAMPION OF HOPE TODAY! The RARE Champion of Hope Awards were created to honor and recognize those true Champions for rare disease. This is a time when we stand together as a community to support those who inspire all of us. Join Global Genes in nominating your RARE Champion of Hope today! NOMINATE HERE

Honor patients with rare diseases by celebrating 2018 Patient Day with Ultragenyx and Global Genes ! Click here for more info.  SUPPORT OUR PROGRAMS. PLEASE CLICK HERE TO DONATE Global Genes is a non-profit 501(c)(3) organization working to eliminate the challenges of rare disease. Global Genes® | 28 Argonaut, Suite 150 Aliso Viejo, CA 92656 | globalgenes.org | Tax ID: 26-3331487 | © Global Genes 2018