Global Genes eNews

AUGUST 2, 2018

Denim Dash 5k Inspiration We’re so inspired by this years’ virtual Denim Dash 5k participants! From the Golden Gate Bridge in San Francisco, California, to remote Quimixto, Mexico, volunteers are raising awareness and much-needed funds for the rare disease community. We’re halfway through the dash event, which closes September 3rd, but it’s not too late to walk, bike, roll or run for rare. Sign Up Here Can’t-Miss Event of the Year 2 days. More than 30 sessions and 100 experts in rare disease. 800 peers from around the world. Have we mentioned the lively keynotes, engaging panels and networking opportunities for patients and advocates? The RARE Patient Advocacy Summit is the largest gathering of rare disease patients and advocates of its kind. We look forward to seeing you there this October! Register Today It’s a Wrap: RARE on the Road 2018 The last stop on the RARE Tour is complete. Thank you to all the amazing rare disease advocates who joined us in Houston, Texas; Salt Lake City, Utah and Nashville, Tennessee to collaborate and build thriving rare disease communities at the local level. A special thank you to all RARE on the Road 2018 sponsors for making it happen. View the Photo Albums

COMMUNITY SPOTLIGHT: ROB LONG Rob Long was an All-American punter at Syracuse University bound for the NFL. His plans took an unexpected turn with the diagnosis of a rare brain cancer. Learn more about Rob’s journey from athlete to patient to director of strategic development for Uplifting Athletes, a nonprofit organization that raises awareness and funding for rare diseases through a network of college student athletes.    Listen to the Rare Cast UNITING MEDICAL STUDENTS WITH RARE PATIENTS The David R. Cox Scholarship for Rare Compassion program pairs emerging medical students with rare disease patients and families in an effort to build understanding and compassion for rare disease among medical professionals. Kristin Hunt, a medical student and rare disease patient, is this year’s first place recipient. Discover how her path to becoming a doctor was inspired by her own personal diagnosis and how her patient match helped her understand new aspects about rare disease. Read Here

RareUniversity has moved to a new platform to empower patients ancaregivers anytime, anywhere. The first online course, Understanding Drug Development, includes 12 lessons on the key stages of drug development. The course is free and allows advocates to learn at their own pace.  Enroll Today SUPPORT OUR PROGRAMS. 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 2016