RLS Advocacy: Make Your Voice Count

Three ongoing action alerts need your attention!

email legislators

The United States Congress is currently drafting appropriations bills for FY 2025. These funding allocations have significant implications for the RLS and sleep disorder community, specifically related to research funding. Federal agencies rely on robust support to continue addressing public health initiatives.

Three ongoing action alerts need your attention!

  1. Support sleep disorder research
    Congressman Adam Schiff is leading a congressional sign-on letter, asking members of the House to prioritize funding for sleep disorders awareness and research for FY 2025. This includes funding for the National Institute of Health and the Centers for Disease Control and Prevention. Ask your representative to support this sign-on letter today! The last day for your representative to sign-on to the letter is Monday, April 29.
  2. Support Sleep Disorders in the PRMRP
    The United States Senate is currently crafting the FY 2025 Department of Defense (DoD) appropriations bill, which will determine which medical conditions are eligible for research funding through the Peer-Reviewed Medical Research Program (PRMRP). Take action by asking your Senator to support “sleep disorders” in the PRMRP for FY 2025! 
  3. The last day to reach out to your representative is Monday, April 29.
  4. Support Funding for the CDEA
    Congressman Ted Lieu is leading a congressional sign-on letter, asking members of the House to support chronic disease research at the Centers for Disease Control and Prevention (CDC). This letter asks for an increase in funding for federal research related to education and awareness activities including a funding request of $6 million for the Chronic Disease Education and Awareness Program (CDEA). To increase support for this letter, we ask that you reach out to your House representatives today. The last day for your representative to sign-on to the letter is Monday, April 29.

Advocacy efforts to protect opioids as a viable treatmEnt option

Advocacy Webinar

The RLS Foundation’s commitment to advocacy led RLSF staff to Washington DC on February 5-6. They met with legislative staff on key committees, emphasizing the need for research funding, enhanced awareness and protected access to critical treatment therapies. The Foundation staff also met with congressional representatives in August 2023. Read more about how they represented the RLS community in Washington DC!

Advocacy also involves YOU. Learn more about our Legislative Priorities so you can join the cause by using your voice and adding your 2 cents!

Learn how to make change at the local level and from the comfort of your home, in this Prep Packet.

Members of the Scientific and Medical Advisory Board of the Restless Legs Syndrome (RLS) Foundation collaborated on this important article, "The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome" published in the January issue of Mayo Clinic Proceedings to provide a clinical approach for appropriate use of opioids to treat refractory RLS. At a time of heightened national concern about opioid abuse, this new guidance is available to help health care providers safely prescribe opioids to treat restless legs syndrome (RLS).

With the help of HMCW, we expect to increase awareness among policy makers about the serious nature of RLS, the need for individuals with RLS to have access to opioids when they are the best treatment option, and the need for more funding for research that will help us identify better treatments and find a cure for RLS.

Ready to take action now? Submit your opioid experience for use in future letters to legislators, or email Matt Duquette (Duquette@hmcw.org) at the Health and Medicine Counsel of Washington.

HMCW will provide direction on how to:

  • Personalize letters to your members of Congress
  • Visit local congressional offices with others
  • Participate in briefings and meetings on Capitol Hill

We will continue to update this page with materials and ways you can participate to keep opioids as a viable option for managing refractory RLS.