Skip to main content

Rare Disease Week on Capitol Hill

More than 600 advocates from 250 patient organizations came together virtually for Rare Disease Week on Capitol Hill that took place July 14-22, 2021. Shelley Bowen, BSF’s Director of Family Services and Advocacy, was among those voices advocating for the Barth syndrome and other rare disease communities.  "It's important to step up, show up and speak up with peer advocacy groups,” Shelley said.  “Alone, BTHS affects approximately 300 people in the world. But we amplify our voice when we work with other peer advocacy groups because the issues that are important to us collectively affect 30 million Americans with a rare disease. And that is a voice that cannot be ignored.”

This year marked the 10th anniversary of this empowering and inspiring week of action coordinated by EveryLife Foundation. The robust schedule provided educational and networking opportunities for attendees, culminating in “Hill Day,” where advocates encouraged members to join the Rare Disease Congressional Caucus, cosponsor the Speeding Therapy Access Today Act of 2021, H.R. 1730/S. 670, cosponsor the Newborn Screening Saves Lives Reauthorization Act, H.R. 482/S. 350, cosponsor the S. 373 the Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act, and cosponsor the Access to Genetic Counselor Services Act H.R. 2144 / S. 1450.

The Diversity Roundtable was another important session during the week. .Patient advocates, industry leaders, and community stakeholders participated in inclusive roundtable discussions about the barriers to care for underserved rare disease communities and the policy solutions that can make a difference. Breakout sessions focused on topics including access, representation, clinical trials and therapy development, and newborn screening and diagnostics.

To learn more about Rare Disease Week and Rare Disease Legislative Advocates, visit

Powered by Firespring