Apply to be a Parent Ambassador! In 2010, our Dravet Syndrome Foundation founding members established our first online support group. What started with roughly 100 members in the first few months has now grown to over 3,000 members as of January 2022! In 2017, we launched the DSF Family Network (DSFFN). We created [...]

12th Annual Research Roundtable The Dravet Syndrome Foundation was honored to host our 12th annual Research Roundtable on December 2nd, 2021, the evening prior to the annual American Epilepsy Society (AES) Meeting. Following the 2020 virtual-only event, it felt electric to be gathered together in person to discuss advances in Dravet syndrome research. [...]

Caregiver Connect In 2019 DSF launced Caregiver Connect – a multi-year collaboration between DSF and Greenwich Biosciences for caregivers and families. Caregiver Connect is a unique multi-faceted program with a focus on helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy who has complex [...]

2021 Day of Dravet Registration is Open Join the DSF Family Network for our 5th annual Day of Dravet workshops this October! DSF’s Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part [...]

Newly Diagnosed Patient Kits When a family first receives a diagnosis of Dravet syndrome for their child, they may feel overwhelmed and unsure where to begin. Often your first instinct is to turn to the internet for more information. But with a rare disease such as Dravet syndrome, general information you may find [...]

2021 Day of Dravet Registration is Open Join the DSF Family Network for our 5th annual Day of Dravet workshops this October! DSF’s Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of [...]

2020-2021 Progress Report In 2018, Dravet Syndrome Foundation (DSF) developed a 5-year strategic plan to articulate the long‐range direction and priorities for our organization. The content for our strategic plan was derived by examining the Dravet syndrome landscape. We listened to a broad range of input from key stakeholders within our community regarding [...]

Back to School Initiative The Seizure Action Plan Coalition recently announced their 2021 Back to School initiatives! Watch the SAP Coalition Town Hall, ABC to SAP: Why Your Child Needs a Seizure Action Plan Webinar, and learn from an expert panel. You will hear about SAPs from a doctor’s point of view, as [...]

Caregiver Connect Grants Dravet Syndrome Foundation (DSF) has long recognized the many needs within our community, particularly the burden of caregivers. It is a lot of work, mentally and physically. Our caregiver community frequently talks about feelings of isolation, depression about the diagnosis, and anxiety over what their child’s future looks like. On [...]

Caring for a loved one with Dravet syndrome or another DEE Caring for a Loved One with DEE and Dravet Syndrome: Harnessing the Power of Knowledge to Enhance Diagnosis, Reduce Seizures, and Improve Overall Quality of Life for All Don’t miss, Caring for a Loved One with DEE and Dravet Syndrome: Harnessing the [...]