Event Spotlight: Global Genes Rare on the Road

On May 13, 2017, I had the honor of photographing the Global Genes:  RARE on the Road – Rare Disease Leadership tour co-hosted by Global Genes^R and the Everylife Foundation at the Loudermilk Center in Atlanta, Georgia.  The message that Global Genes and the Everylife Foundation are determined to spread through this event would provide the much needed support to those impacted by rare disease.

The purpose of the RARE on the Road tour is “to provide critical education and insights to rare disease patients, advocates and caregivers, while collaborating in an interactive and engaging environment.”  While covering the event, it became extremely evident that the attendees were seeking as much knowledge as possible to spread the message about rare diseases in hopes of creating more advocacy.   One of the main objectives that I grasped from the informative event was that those that are impacted would like for their message to be heard and taken as seriously as other diseases that impact larger populations of people such cancer and HIV / AIDS.

About Global Genes^R

Guided by its mission to eliminate the challenges of rare disease, Global Genes ^R is a leading rare disease patient advocacy organization with worldwide reach that serves and promotes the needs of patients and families touched by rare and genetic diseases. Since 2009, under the unifying symbol of HOPE, the Blue Denim Genes RibbonR , Global GenesR has been building awareness, developing patient-focused education and advocacy tools, and funding patient care programs and early investigative research. For more information, please visit www.globalgenes.org. Also feel free to join the RARE conversation!

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