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 […]
5 Minutes for Advocacy Read More »
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
Request a Proclamation for Dravet Syndrome Awareness Day Read More »
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
2025 Rare Disease Week Legislative Advocacy Read More »
The White House recently unveiled a more detailed budget proposal that sheds additional light on the Trump administration’s plans to overhaul the Department of Health and Human Services (HHS) in the coming year. The proposal includes significant funding cuts to the National Institutes of Health (NIH). The revised budget reinforces earlier intentions to reduce the
HHS Cuts and Restructuring Read More »
We are pleased to share that on February 3, 2026, Congress passed, and the President signed, a spending package for federal Fiscal Year (FY) 2026. The Rare Pediatric Disease Priority Review Voucher (PRV) Program was reauthorized for five years. This program gives pharmaceutical companies a priority review voucher upon Food and Drug Administration (FDA)
Give Kids a Chance Act Read More »
The Administration wants to close the U.S. Department of Education, and Congress needs to take action. Without an appropriate education, students with disabilities face higher rates of poverty, unemployment, poor health, and social isolation. The Department of Education is crucial for students with disabilities. It holds states accountable when they’re not meeting the needs of
Protect the Department of Education Read More »
There is a new effort underway to create a National Plan for the Epilepsies. This legislation, if passed, would direct the federal government to develop a National Plan for Epilepsy to prevent, diagnose, treat, and cure the epilepsies and improve the well-being of people with epilepsy and their families. We support anything that would bring
National Plan for the Epilepsies Read More »
A caucus is a group of bi-partisan legislators that join together to support a specific cause. This newly formed Epilepsy Caucus will help to promote legislation that will benefit the epilepsy community, so we need to get as many members as possible to join. Click below to check to see if your legislators are already
Congressional Epilepsy Caucus Read More »
We are pleased to share that on February 3, 2026, Congress passed, and the President signed, a spending package for federal Fiscal Year (FY) 2026. It includes a provision for thhe Accelerating Kids’ Access to Care Act, which will help children covered by Medicaid or the Children’s Health Insurance Program (CHIP) access medical care
Ensure Out of State Medicaid Coverage Read More »
We are pleased to share that on February 3, 2026, Congress passed, and the President signed, a spending package for federal Fiscal Year (FY) 2026. The package includes funding for the Departments of Defense and Health and Human Services, including: $11.5 million for the Centers for Disease Control and Prevention (CDC)’s Epilepsy Program (level
Save Research Funding Read More »
