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March 22, 2017
Rare disease patient advocacy organizations Global Genes – Allies in Rare Disease and the EveryLife Foundation for Rare Diseases are partnering to present the "RARE on the Road-Rare Disease Leadership Tour". This new leadership series will reportedly "bring important insights and timely discussion to rare disease patients" and "help educate and empower the rare disease community’s next generation of advocacy leaders by providing the tools for greater activation and engagement".
RARE on the Road-supported by Boston, MA's Vertex Pharmaceuticals-is a three-stop road show, with plans to expand each year with additional regional meetings. The tour will kick-off in Atlanta, GA on May 13, then travel to Kansas City, MO on June 5, and conclude in Portland, OR on July 15. It offers a full agenda of topics and discussions at each location. The program series will provide attendees with the skills and knowledge to affect change for the rare disease community.
Further details: http://everylifefoundation.org/rare-road-2017/