Free to attend and learn

This is a great event for curious and interested minds. These type of symposiums help you gain insight to the entire spectrum of rare diseases, including rare cancers.

“Join the EveryLife Foundation and Global Genes on tour! RARE on the Road will educate rare disease patients, advocates and caregivers through collaboration in an interactive and engaging environment.

Building on the successful regional Legislative Conferences hosted by Rare Disease Legislative Advocates, the RARE on the Road events will highlight topics from capacity building to a patient’s role in drug development, including breakout sessions and hands-on workshops. These free regional events will help advocates learn, grow and become independent activists for their rare disease community.

Free registration is available for each event by clicking the links below. Each event will run from 8:30am through 4:30pm, and will include a networking lunch.

Saturday, May 13th, 2017: Loudermilk Conference Center, Atlanta, GA

Monday, June 5th, 2017: Kauffman Foundation Conference Center, Kansas City, MO

Saturday, July 15th, 2017: Shriners Hospital for Children, Portland, OR

A limited number of $100 travel stipends are available for rare disease patients and caregivers who otherwise would not be able to attend. Please apply here. Applications are due one month before each event, and recipients will be notified within a week of the deadline.

RARE on the Road is proudly sponsored by Vertex Pharmaceuticals Inc. For information on additional sponsorship opportunities, please contact Carol Kennedy at ckennedy@everylifefoundation.org.”