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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 […]

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

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

This bill would reauthorize an existing program which allows drug companies to receive a Priority Review Voucher (PRV) in order to have an expedited approval process for a treatment that would benefit pediatric rare disease patients. This is important to our community because we want the companies working on new treatments to have every tool

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