Rare Disease Week 2025

In February 2025, Bryn and Jadin participated in Rare Disease Week on Capitol Hill in Washington, D.C., to advocate for the rare disease community.

Rare Disease Week, organized by the EveryLife Foundation for Rare Diseases, took place from February 24 to 26, 2025. This annual event brings together patients, researchers, and advocates to engage with policymakers and raise awareness about the challenges faced by those with rare diseases. The 2025 event saw over 800 advocates gather in Washington, D.C., highlighting the community's commitment to influencing policy and promoting research.

During the week, Bryn and Jadin attended training sessions to prepare for meetings with members of Congress. These sessions equipped advocates with the knowledge and tools necessary to effectively communicate the needs of the rare disease community. The Webb Lab's involvement underscores their dedication not only to scientific research but also to policy advocacy, aiming to improve the lives of those affected by rare genetic disorders.

While the FDA and NIH's annual Rare Disease Day event was postponed in 2025, the presence of numerous advocates in Washington, D.C., including the Webb Lab team, ensured that the voices of the rare disease community were heard.