Thank you to the rare disease patients and caregivers from across the southeast who recently joined the Everylife Foundation and Global Genes in Atlanta, Georgia for the first stop of the RARE on the Road Rare Rare Disease Leadership Tour! We appreciated the opportunity to make new friends in the rare community and reconnect with seasoned advocates.

The RARE on the Road Rare Disease Leadership Tour aims to educate rare disease patients, caregivers and other advocates through collaboration in an interactive and engaging environment. These FREE events will cover topics such as capacity building and a patient’s role in drug development with a hands-on workshop and networking lunch. The sample agenda is available here.

Limited spots remain for RARE on the Road in Kansas City, Missouri on June 5th and Portland, Oregon on July 15th so register TODAY! Don’t miss this opportunity to strengthen your skills and expand your rare network. 

A limited number of $100 travel scholarships are still available for RARE on the Road in Portland, Oregon on July 15th. You can apply here through June 18th

Please help us spread the word by inviting others in the rare disease community to join us in Kansas City, MO on June 5thor Portland, OR on July 15th. Additional information and links to register can be found here. A flyer to share at community meetings or on social media (with hashtag #RAREontheRoad) is available here

Thank you to the sponsors of RARE on the Road. 

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