This free 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 with their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate […]
2026 Rare Disease Week on the Hill Read More »
When people with disabilities have access to essential health care and services, they can live on their own terms. Medicaid makes this possible. It provides critical health care and services to millions of children and adults with disabilities, so they can live healthier, fuller lives. Infants with disabilities get a strong start in life through
Protect Medicaid Services Read More »
What a dream come true! Sofie’s Journey awarded our family a scholarship to attend Epilepsy Awareness Day at Disneyland (EADDL) this year. We have talked about going for years now, but the thought of taking Zachary, our child with Dravet syndrome, to Disneyland gave me immediate anxiety. But after the last 2 years of him
From the Epilepsy Foundation on November 13, 2025: The longest partial government shutdown in history has ended after 43 days. On Monday, the Senate advanced the legislative package by a vote of 60-40 and then yesterday, the House of Representatives approved it by a vote of 222-209 and President Trump signed the bill into law late last night. Below,
Impact of a Federal Government Shutdown on the Epilepsy Community Read More »
For individuals living with Lennox-Gastaut syndrome (LGS), Dravet syndrome, or tuberous sclerosis complex (TSC)—and the caregivers who support them—seizures are only part of the challenge. Behavioral challenges can also be disruptive—and far less supported. That’s why we’re launching The Behavioral Impact Project: Amplifying Caregiver Voices– a large-scale survey designed to capture real-world caregiver experiences with
Help Us Understand the Impact of Behavioral Challenges in Rare Seizure Disorders Read More »
Rare Across America is an advocacy initiative by the EveryLife Foundation that empowers you to meet with your Members of Congress at their local district offices. By sharing your personal story, you can help educate them about the key issues affecting the rare disease community. The program also provides training to ensure you feel confident
Rare Across America – August 2025 Read More »
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
60 Minutes for Advocacy? Read More »
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
10 Minutes for Advocacy? Read More »
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 »
