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Submit your patient story to be hand-delivered to your Members of Congress!

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!


Rare Stories

  • Please list the website of your patient group or your personal website.
  • Please write a statement about how rare disease has affected your life and what you would like your U.S. Representative and Senators to do on behalf of the rare disease community.

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.