The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
EveryLife Foundation Read More »
By connecting epilepsy centers with each other and with community service providers, and including people with epilepsy and their families, the Epilepsy Learning Healthcare System (ELHS) will empower all people with epilepsy to live their highest quality of life, striving for freedom from seizures and side effects. DSF is proud to be a community partner
Epilepsy Learning Healthcare System Read More »
The Epilepsy Leadership Council (ELC) is made up of individuals representing organizations serving individuals with epilepsy and their families, as well as professionals, and governmental organizations. The mission is to develop and coordinate among its members shared projects that will have a positive impact on the lives of individuals with epilepsy, focusing on those areas
Epilepsy Leadership Council Member Read More »
Epilepsy Alliance America, founded in 2018, is a growing national organization representing like-minded local, regional, statewide, and even other national agencies dedicated to serving the everyday needs of people who live with seizures and epilepsy every day. DSF is proud to be a nonprofit partner.
Epilepsy Alliance America Read More »
At its most fundamental level, the Clinical Trials Transformation Initiative (CTTI) is a group of individuals and organizations that want to improve the quality and efficiency of clinical trials. It was co-founded by Duke University and the U.S. Food and Drug Administration in 2007 in an effort to identify and address challenges to well-designed, properly
Clinical Trials Transformation Initiative Read More »
Together, the Dravet syndrome community managed to accomplish some pretty amazing things in 2022. The year started off with our virtual Externally-Led Patient-Focused Drug Development meeting on Dravet syndrome in February. This meeting was a long-awaited opportunity for the Dravet syndrome patient community to educate representatives of the Food and Drug Administration (FDA) and pharmaceutical
What We Accomplished Together in 2022 Read More »
The Center for Innovation & Value Research is an independent nonprofit research organization working to make sure that all patients have access to the right care at the right time. Their mission is to advance the science, practice, and use of patient-centered Health Technology Assessment to support decisions that make healthcare more meaningful and equitable.
Center for Innovation & Value Research Read More »
As we close out the year, we wanted to send our holiday wishes to our amazing community!
Happy Holidays from DSF! Read More »
What is on your agenda today? How about finding a cure for Dravet syndrome? At the Dravet Syndrome Foundation (DSF), that is on our agenda every single day. We invite you to donate again and be part of that effort to create a cure or therapy that enhances the quality of life for people with
2022 DSF Annual Campaign Read More »
We are grateful for our community this Thanksgiving. Our patient families, leaders, staff, clinicians, researchers, and industry partners make what we do every day possible. And for that, we are immensely thankful. For Our Board, Staff, and Volunteers: We are grateful to our many leaders who have shown up for our community – online and
With Gratitude this Thanksgiving Read More »
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