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 »
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
Ensure Out of State Medicaid Coverage Read More »
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
Save Research Funding Read More »
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
Protect Disability Services Read More »
Haz clic en este enlace para abrir la plantilla de perfil. Nota: Si no tienes una cuenta de Canva, deberás crear una cuenta gratuita aquí para continuar. Seleccione “Usar plantilla para nuevo diseño” Selecciona “Cargas” en el lado izquierdo y “cargar archivo” o arrastra y suelta la imagen que quieres que sea tu foto
Crea una foto de perfil personalizada para redes sociales Read More »
TOOLS TO SUPPORT YOUR AWARENESS EFFORTS: 30 Days of Advocacy Calendar Downloadable Dravet Facts graphics Turning Awareness Into Action: Tips for Advocating Six ways to #AdvocateforDravet graphic Protect essential programs funding graphic Example emails to legislators “I Advocate for Dravet” customizable template “My Dravet Warrior Is” customizable template “Three Things I Wish You Knew” template
2025 DRAVET SYNDROME AWARENESS MONTH TOOLKIT Read More »
Click this link to open the profile template. Note: If you do not have a Canva account, you will need to create a free account here to continue. Select “Use template for new design” Select “Uploads” on the left-hand side and “upload file” or drag and drop the image you’d like to make your profile
Create a Custom Social Media Profile Picture Read More »
VuMedi is a private video education platform for doctors. Over 450,000 doctors use VuMedi to improve patient care and grow their practice. DSF is excited to have received an invitation to partner with VuMedi, sharing educational videos from our archives to support healthcare professionals in diagnosing and caring for patients with Dravet syndrome.
Northeast RegionDay of Dravet Saturday, September 20 Hershey Lodge (Hershey, PA) Register here Registration is just $25 per family thanks to the generous support of our sponsors! Event Information and Schedule Saturday September 20: Day of Dravet Workshop 9 am – 4 pm We will be in the Great American Hall meeting space at Hershey
2025 Day of Dravet Workshop – Northeast Read More »
