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 [...]
2021 DSF Family & Professional Virtual Conference Learn the latest from top experts in Dravet syndrome! Here is your opportunity to hear the latest on new treatments and research in the field of Dravet syndrome on June 24th-26th - in your home and on your schedule. Join us live to participate in Q&A sessions with [...]
Order now for Dravet Awareness Month! Is your Super Siblings looking for volunteer hours for school? Is your Super Sibling interested in getting involved with DSF, but not sure where to start? We have the perfect opportunity for him or her. Choose from dozens of projects or suggest your own. Bake Sale Garage [...]
2021 DSF Family & Professional Virtual Conference Research and new treatments continue to move forward in the field of Dravet syndrome. With the postponement of our 2020 event due to the pandemic, we wanted to offer a virtual learning opportunity to bridge the gap until we can meet again in person next year. [...]
Patient Assistance Grant Program Opens March 1 DSF has long recognized the financial burden our families face and has offered our Patient Assistance Grant (PAG) program since we were first founded in 2009. While it cannot fulfill all of the financial needs within our community, we hope that it offers a positive avenue [...]
