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From the Alliance for Regenerative Medicine on October 1, 2025: DSF is sharing the information below, originally posted by the Alliance for Regenerative Medicine, to highlight potential impacts on the Dravet syndrome community. As of midnight on October 1st, the U.S. federal government has entered shutdown mode. That means that thousands of federal workers have […]

Request Meetings with Your Congressional Offices If you have more time, requesting and holding a meeting with your congressional o—ces gives you more time to explain your concerns, ask questions, and ask for their support. For each member of Congress you reach out to, it can take at least one hour total to request the

Share with Your Network on Social Media You can amplify the epilepsy community’s statement opposing cuts to the CDC, medical research, and ACHDNC by posting on your social media channels. Graphics and sample social media content dveloped by the Epilepsy Foundation can be accessed in this public folder: https://bit.ly/accep25

Email your Members of Congress! One of the easiest and quickest way to take action is to use the Epilepsy Foundation’s tool to email your members of Congress about your concerns. Just enter your address and a few clicks later, you can send an email to your U.S. Senators and Representative. We strongly encourage advocates

June 23 is Dravet Syndrome Awareness Day! A great way to spread awareness is to have your city or state make a proclamation in honor of the day. We have prepared this guide to help if you’d like to see if you can make this happen in your local community! If you are interested in

  This multi-day event, hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases), brings together rare disease advocates from across the country to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate