Any rare disease patient or caregiver unable to participate in Rare Disease Week on Capitol Hill is encouraged to submit a personal story and photo to be hand-delivered to Congress on Lobby Day on March 1st. It is critical for each Member of Congress to hear from local individuals and families about the impact of rare disease and what public policy changes are needed to improve the lives of rare disease patients. Help us give the rare disease community a voice on Capitol Hill!
Thank you for sharing your unique story with us as part of Rare Disease Week on Capitol Hill. The deadline for submissions is February 19, 2017.