Our Advocacy
The Webb lab is invested in patient advocacy with the rare disease community. We work with the Moebius Syndrome Foundation and the Everylife Foundation for Rare Diseases to amplify patient voices and support health policies that benefit this community.
08/05/2024-08/16/2024
Rare Across America
Rare Across America is the opportunity to meet with your Members of Congress at their in-district offices. Amanda, Jadin, and Norman all met with the offices of Senator Baldwin, Senator Johnson, and Representative Pocan.
02/25/2024-03/01/2024
Rare Disease Week
Dr. Webb, Sophia, and Norman all traveled to Washington, D.C. to advocate alongside hundreds of advocates in support of the rare disease community. They all met with the offices of Senator Baldwin, Senator Johnson, Representative Steil, and Representative Pocan.
11/10/2024
Living With Moebius Syndrome: Our Journey Together
Sophia, Norman, and Dr. Webb interview individuals with Moebius Syndrome and created a narrative medicine video to highlight their lived experiences.