This week, members of the Cure CMD Advocacy Team will join hundreds of rare disease advocates in Washington D.C. for Rare Disease Week on Capitol Hill. Hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases), this annual event educates participants on policy proposals impacting the rare disease community and provides opportunities to meet with their Members of Congress to advocate for these policies. You can learn more about the event and register for the virtual portions at everylifefoundation.org/rare-advocates/rare-disease-week.
This year’s legislative asks focus on research funding and on elevating the patient voice in research.
Appropriation requests for FY2024 include increased funding for the Orphan Products Grant Program, additional funding for the National Center for Advancing Translational Sciences (NCATS), and a funded report to define Ultra Rare.
Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act (S. 526/H.R. 1092): This legislation will amend existing law and now require the FDA to include a description of how submitted patient experience data and information were considered in the risk-benefit framework.
Request to join the Rare Disease Congressional Caucus: This caucus helps bring public and Congressional awareness to the unique needs of the rare disease community.
Even if you can’t travel to D.C. or attend the virtual Rare Disease Week events, you are encouraged to share your story with your Members of Congress and include these asks in your communications. Reach out to email@example.com anytime to learn more about our advocacy efforts and how you can get involved.
Your voice is important!