RARE on the Road

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

May 13, 2017:  Atlanta, GA – Click here for Agenda. 

June 5, 2017:  Kansas City, MO 

July 15, 2017:  Portland, OR – Click here to register.  Click here for Agenda.

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 2016 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. Applications for Portland will be accepted until June 18, 2017.



For more information and for sponsorship questions please contact:

Lisa Schill-EveryLife Foundation lschill@everylifefoundation.org

Carol Kennedy-EveryLife Foundation CKennedy@everylifefoundation.org

Kendall Davis-Global Genes kendallj@globalgenes.org

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