Epilepsies Action Network brings together parents, siblings, caregivers, and advocates in partnership with doctors, nurses, researchers, and policy makers to raise awareness and increase funding for The Epilepsies to improve the lives of all persons living with this disease. The network is currently leading the effort to create a National Plan for epilepsy in the U.S. Alzheimer’s, Parkinson’s, Autism, ALS, and MS all have National Plans. (Epilepsy is the only common neurological disorder without one.) Learn more
The mission of Rare Epilepsy Network (REN) is to work with urgency to collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy.
- Signed On in Support of European Action Plan for Rare Diseases: Foremost among the Open Letter’s demands is a call for the European Commission to launch a comprehensive policy framework in the form of a European Action Plan for Rare Diseases. This framework, with clear and measurable objectives, should foster collaboration across EU Member States and other European countries to significantly improve the lives of people living with rare diseases. Learn more
- Signed On in Support of Brain Research Through Advancing Innovative Neurotechnologies (BRAIN) Initiative: The BRAIN Initiative is aimed at revolutionizing our understanding of the human brain. It is a partnership between the U.S. Federal and non-Federal partners with a common goal of accelerating the development of innovative neurotechnologies. Through the application and dissemination of these scientific advancements, researchers will be able to produce a revolutionary new dynamic picture of the brain that, for the first time, shows how individual cells and complex neural circuits interact in both time and space. Through this sign-on letter, we urge Congress to prioritize funding for this important program, ensuring that researchers have the resources they need to make significant strides in neuroscience research and drug discovery.
- Signed Letter in Support of U.S. Funding Appropriations for Epilepsy-Related Programs and Research: Along with other organizations in the epilepsy community we signed a letter supporting continued or increased funding for epilepsy-related programs and research in FY 2025. It discusses the importance of epilepsy-related programs and research at the Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), Congressionally Directed Medical Research Programs (CDMRP) and the VA.
- Signed Letter in Support of Epilepsy Research as Part of 21st Century Cures Act: The letter thanks Representatives DeGette and Bucshon for their leadership on Cures 2.0, and expresses our strong support for this important initiative. It also urges Congress to continue to build on the 21st Century Cures Act in supporting epilepsy research and the development and coverage of epilepsy therapies. Specifically, the letter discusses the need to support issues and programs that are critical for epilepsy. It also asks Representatives DeGette and Bucshon to include a new provision in Cures 2.0 authorizing a national plan for the epilepsies. Lastly, the letter discusses the importance of Food and Drug Administration (FDA) guidance and Cures 2.0 provisions on issues such as cell and gene therapy, health literacy, diversity in clinical trials, the coverage of breakthrough medical devices, and more. These comments are in alignment with and reinforce those of other advocacy coalitions, including the National Health Council (NHC) and the American Brain Coalition (ABC).
If you would like to get involved in advocacy, please contact president@pura-syndrome.org to get connected.