Share Your Rare Story

During Rare Disease Week in D.C. on Wednesday the 25th & Thursday the 26th your “Rare Story” will be hand delivered by advocates to the offices of your Members of Congress.

By sharing your story, representatives can get a glimpse into the courage it takes living with a rare disease. Your story can help influence an office into supporting legislation by letting them know that they have constituents living with rare diseases.

Click here for directions and the form to submit your story