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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

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

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

The Accelerating Kids Access to Care Act would make it easier for patients to see providers out of state because it would set up a framework for doctors to more easily accept Medicaid plans from other states. For our community, that means potentially not having to pay out of pocket to see a Dravet specialist

Overview provided by 5calls.org: On February 7, the Trump administration moved to cut billions of dollars in funding from the National Institutes of Health (NIH) and National Science Foundation (NSF) by placing an immediate cap on “indirect costs”. Indirect costs include infrastructure, facility maintenance, and staff salaries. These funds ensure that research can happen. This new policy will

Congress is beginning to make decisions about how much funding each program will get next year, and programs that support and protect people with disabilities are at serious risk. The President’s budget proposal is the starting point of this annual process. It recommends that Congress make cuts to programs that millions of people with disabilities

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