Advocates Lobby US Congress During Virtual Rare Disease Week

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by Shayna Korol |

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More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community.

Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to learn about federal legislative issues, meet other advocates, and share their stories with policymakers.

This year’s event featured 250 patient organizations and 367 meetings with Congress.

The week began with the Rare Disease Congressional Caucus Briefing, titled “Rare Disease Therapy Development: Existing Challenges and Proposed Innovative Solutions.” The briefing featured congressman Gus Bilirakis and senator Amy Klobuchar.

The first day ended with a screening of “A Mystery to Me,” a documentary film about myasthenia gravis. The screening was followed by a panel discussion about the patient experience and the making of the film during the COVID-19 pandemic.

On July 15, the winners of the 2020 Rare Artist Contest presented their work at a virtual gallery opening. The contest offers a platform for individuals affected by rare diseases to showcase their creations and highlight their stories.

During the legislative conference, on July 15 and 16, attendees learned about issues in rare disease policy and how to prepare for meetings with Congress members, and networked with other advocates.

On July 16, attendees met the first graduating class of the Young Adult Representatives of RDLA (YARR) leadership academy. The academy is a series of online courses for young adults who want to be the next generation of advocates.

After their graduating ceremony, YARR members held a virtual meetup for networking and discussing the day’s events. They also took part in a cooking class featuring a recipe from “The Rare, Chronic, and Deliciously Iconic Cookbook.” Proceeds from the cookbook go to Our Odyssey, a nonprofit that provides social and emotional support to young adults living with rare diseases across the country.

On July 20 and 21, advocates put what they learned from the legislative conference into action for “hill day,” meeting with members of the U.S. House and Senate.

Conference attendees met with legislators to advocate for the passage of the Speeding Therapy Access Today (STAT) Act of 2021 and the Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) act. The STAT act seeks to accelerate the development of rare disease treatments, and the BENEFIT act aims to ensure that the patient experience is meaningfully taken into account in the therapeutic review process.

Advocates also lobbied for the passage of the Newborn Screening Saves Lives Reauthorization Act, which passed in the House but is pending in the Senate. The act reauthorizes and expands upon the federal newborn screening program.

Attendees also encouraged their Congress members to join the Rare Disease Congressional Caucus and co-sponsor the Access to Genetic Counselor Services act, which would allow genetic counselors to bill Medicare directly. This would provide Medicare beneficiaries with direct access to genetic counseling services, which is currently not the case.

On the last day, July 22, attendees took part in a diversity roundtable discussion about barriers to care for underrepresented and underserved rare disease communities. Patient advocates, community stakeholders, and industry leaders attended breakout sessions on access to healthcare, representation, clinical trials, and newborn screening and diagnostics. They discussed policy solutions that can resolve health disparities and better meet the needs of all people in the rare disease community.

The in-person Rare Disease Week on Capitol Hill 2022 will take place Feb. 28–March 2.


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