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Dear Friends, As we continue to make advancements in research and treatment for Dravet syndrome, we are hopeful that more and more of our Warriors will make it to adulthood. We're creating additional resources and information for adults with Dravet syndrome because the characteristics of Dravet syndrome often change in adulthood. Different therapeutic approachs or increased care may be needed as the patient ages. However, studies and information for adult patients are still limited. This is why we added resources for adults with Dravet, such as "Creating a Longterm Care Plan" and "Developing a Lifelong Support Network." We hope that these resources will help and educate our patients, families, supporters, and medical experts to better understand Dravet syndrome in adults and the care changes that may be needed. Warmly, Dravet Syndrome Foundation | |
Transitioning from School to Adulthood Planning Guide | |
Transitioning to adulthood is a complex, confusing, and often emotional process. For each Dravet patient family, the process will look and feel very different because the wants and needs of each young adult differ, as well as their limitations. That's why we have created a transition planning guide to assist parents through the often intimidating process of transitioning out of high school/educational entitlement into the world of adult services. We encourage you to review this planning guide to help you through the process and, of course, lean on your family, friends, and the broad Dravet patient community to help you navigate this new journey! | |
News and Events - Steps Toward a Cure - Steps Toward a Cure is a series of family-friendly events that raise awareness and funds while celebrating our Dravet superheroes. These events take place throughout the year, primarily in the fall, in communities nationwide. See our upcoming events here.
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