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More than 600 people attended 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 United States to learn about federal legislative issues, meet other advocates and share their stories with the decisions-makers.

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

The week began with the Congressional Caucus briefing on rare diseases, titled “Development of therapies against rare diseases: 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 on myasthenia gravis. The screening was followed by a panel discussion on the patient experience and filmmaking during the COVID-19 pandemic.

On July 15, the winners of the Rare Artists Competition 2020 presented their work during a virtual gallery opening. The competition provides a platform for people affected by rare diseases to showcase their creations and showcase their stories.

During the legislative conference on July 15-16, participants were briefed on rare disease policy issues and how to prepare for meetings with members of Congress, and networked with other defenders.

On July 16, attendees met with the first 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 the graduation ceremony, YARR members hosted a virtual meeting to network and discuss the day’s events. They also participated in a cooking class featuring a recipe from “The Rare, Chronic, and Deliciously Iconic Cookbook”. Proceeds from the cookbook go to Our Odyssey, a non-profit organization that provides social and emotional support to young adults living with rare diseases across the country.

On July 20 and 21, advocates put into practice what they learned from the Legislative Conference for “Hill Day,” by meeting with members of the United States House and Senate.

Conference attendees met with lawmakers to advocate for passage of the 2021 Speeding Therapy Access Today (STAT) Act and the Better Empowerment Now Act to Improve Framework and Improve Treatment (BENEFIT). The STAT law aims to accelerate the development of treatments against rare diseases and the BENEFIT law aims to guarantee that the patient’s experience is really taken into account in the therapeutic review process.

Advocates have also pushed for passage of the life-saving newborn screening re-authorization law, which was passed in the House but is pending in the Senate. The law re-authorizes and expands the federal newborn screening program.

Participants also encouraged their members of Congress to join the Rare Disease Congressional Caucus and co-sponsor the Access to Genetic Counseling 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 final day, July 22, participants took part in a diversity panel discussion on barriers to care for underrepresented and underserved rare disease communities. Patient advocates, community stakeholders and industry leaders attended breakout sessions on healthcare access, advocacy, clinical trials, and newborn screening and diagnosis. They discussed policy solutions that can resolve health disparities and better meet the needs of all members of the rare disease community.

Rare Disease Week in-person at Capitol Hill 2022 will take place from February 28 to March 2.

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