2024 Rare Disease Week Recap
Advocacy
For Rare Disease Week 2024, we asked our Batten community to lift their voices by utilizing our advocacy module and submitting a pre-written letter to their legislator(s) urging them to elevate our mission as a priority for funding and support. Below are the results:
Click here for a recap of 2024 Rare Disease Week on Capitol Hill by the Everylife Foundation.
Rare Disease Day at FDA
President’s Report
BDSRA President & CEO Amy Fenton Parker attended Rare Disease Week on Capitol Hill in 2024 and met with staffers representing Ohio legislators.
Click here to read the Q&A summary about her experience.
