Global Genes® and EveryLife Foundation for Rare Diseases Expand RARE on the Road – Rare Disease Leadership Tour

Leading rare disease patient advocacy organizations, Global Genes and the EveryLife Foundation for Rare Diseases, are pleased to announce the third annual RARE on the Road – Rare Disease Leadership Tour.

RARE on the Road is a collective effort to build and activate the rare disease community at a local level. The multi-city event increases value, insights, and knowledge for rare disease patients, caregivers and advocates. Participants will learn how to tell their story, connect with others in the community, and navigate the complex world of rare disease. Each event is from 8:30 a.m. – 4:30 p.m. and includes an agenda with multiple educational sessions and expert speakers, including presenters from the Mayo Clinic Social Media Network who will teach advocates how to reach a targeted audience, position themselves as an expert and drive website traffic.

Globally, 350 million people are living with a rare disease. There is a tremendous need for coordinated support, education, collaboration and experience sharing for people affected by rare diseases. For more information or to register, visit raretour.org.

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