Our ARC team of amyloidosis patients, caregivers and ARC staff took part as advocates in key activities during the week of Rare Disease Day, which is held on February 28th each year.
During this time EveryLife Foundation holds an annual event, where rare disease patients of all types come together to spread awareness and advocate on Capitol Hill in Washington, D.C. Each attendee is scheduled in meetings with their state representatives to tell their story and has the opportunity to ask for legislative action to support specific rare disease issues. The unique experience allows patients to advocate for their disease in ways that can directly impact legislature.
This year over 500 advocates, from across the United States, attended the week’s events in D.C.. By bringing advocates together, Rare Disease Week helps give a voice to this often overlooked community. While each individual condition is uncommon, all together approximately 1 in 10 people are affected by a rare disease.