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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. “Rare diseases are not rare,” said Dr. Christopher Austin, director of the NIH’s National Center for Advancing Translational Sciences (NCATS), “we just have a marketing problem.”

In order to represent the needs of the amyloidosis community, ARC invited 4 patients and caregivers to join the ARC team  and attend Rare Disease Week. Each spoke with their state representatives and highlighted some of the key challenges facing amyloidosis patients today including the need for more funding for research, better diagnostic tools, and affordable access to approved drugs for all patients. The presence of amyloidosis patients on the Hill is a powerful reminder to representatives of the prevalence and impact of these diseases on the communities they serve.

Jo Lynn, an amyloidosis caregiver who attended with ARC, reflected on the experience “I attended Rare Disease Week to support my husband along with all the other patients battling cardiac amyloidosis. Research, mental strength, and determination are key in taking on a disease of this kind. You have to be an advocate for the ones you love.”

If you are interested in becoming an amyloidosis advocate learn more here>>

To learn more about the rare disease community and advocating for important issues, consider registering for the EveryLife Foundation’s upcoming series of events, Rare On The Road>>

 

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