April 11, 2023

RLS patients are familiar with self-advocacy, often having to play the dual role of patient and educator. Even within the medical community, a lack of understanding of RLS results in delays in proper diagnosis and treatment. Advocacy is a primary activity of the RLS Foundation, focusing on allocating funds to RLS research, increasing physician and public education, and protecting access to effective treatments.

An updated clinical guideline issued by the Centers for Disease Control and Prevention (CDC) in November failed to identify a medical exception for RLS regarding access to opioid therapy, despite exceptions being made for other medical conditions. It is important to recognize the role that low total daily doses of opioids have in providing relief for those with RLS when other treatments are not effective in controlling symptoms.

The RLS Foundation encourages everyone in the RLS community to use their advocacy voices to reach the legislative sector by participating in some of the activities suggested below!

1. Connect with Your Community

We have a network of support groups and contacts across North America that allow you to connect to the entire RLS community. Host a virtual or in-person meeting to write letters and share your RLS story with your congressional representatives. There is power in numbers. Emphasize that, without the explicit mention of RLS in CDC guidelines, state and federal agencies have the potential to deny effective treatment to the RLS community. You can visit www.congress.gov/members/find-your-member to search for your state representative’s contact information.

2. Spread Awareness

Speak to your friends, family, neighbors and healthcare providers about your experience. Educating those around you introduces them to an unfamiliar topic while encouraging them to participate in bringing about change. Social media is a great resource for sharing your message and connecting with people or groups who understand your RLS.

3. Participate in Hill Day

The Foundation hopes to host a 2023 Hill Day – a day dedicated to educating congressional representatives about the impact RLS has on physical and mental health, as well as the barriers to effective treatment. The last in-person RLS Hill Day was in 2019, when 25 members of the Foundation traveled to Washington, DC, for two days of meetings with their legislators.

You can participate in Hill Day by writing letters, submitting videos or joining the RLS Foundation team in Washington to tell your RLS story. Look for our call to action for participants in future emails, blog posts and eFriends newsletter! Learn more about making your voice heard and view the many advocacy resources on our website .