Hundreds of advocates (caregivers and patients) gathered in Washington, D.C. to make their voices heard regarding Federal legislation. Our message: support bills that impact the rare disease community. Laura is pictured here with Siri Vaeth who is the Executive Director of CFRI in California. Siri’s daughter has CF.
- Continue to support Federal Biomedical Research funding and public health support (FDA, CDC and NIH).
- Reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) program at FDA.
- Including Accelerating Kids’ Access to Care Act (AKACA) in the first available legislative package.
- Ask members of congress to join the Rare Disease Congressional Caucus
For more information on these federal issues: https://everylifefoundation.org/rare-advocates/
Pictured: Siri and Laura on the Hill and Everylife group
