RARE on the Road – 2018

Join Global Genes and EveryLife Foundation for Rare Diseases on tour:

June 9, 2018:  Houston, TX

June 30, 2018:  Salt Lake City, UT 

July 21, 2018:  Nashville, TN

RARE on the Road will bring critical education and insights to rare disease patients, advocates and caregivers, while collaborating in an interactive and engaging environment. Building on the successful 2017 EveryLife Foundation Regional Legislative Conferences, RARE on the Road will focus on an expanded agenda that includes topics from Capacity Building to the Patients’ Role in Drug Development, including breakout sessions and hands-on workshops. These regional events provide patients and advocates the opportunity to engage more broadly with other rare advocates and benefit from connecting with other disease advocacy leaders. RARE on the Road is working to help advocates learn, grow and become independent activists for their rare disease community.

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



Click here to learn more about 2017 RARE on the Road events.


For more information and for sponsorship questions please contact:

Carol Kennedy-EveryLife Foundation CKennedy@everylifefoundation.org

Kathy O’Connor-Global Genes kathyo@globalgenes.org

Seth Fritts-Global Genes sethf@globalgenes.org