DSF offers a variety of educational webinars and videos to help caregivers and families to navigate their loved one’s diagnosis of Dravet syndrome. These recordings provide remote learning opportunities with practical advice on diagnosis, clinical care, current research, caregiver challenges, and more. Find playlists on different topics ranging from treatment to best care practices to research, featuring videos from previous DSF educational events.
DSF’s 6th Biennial Conference took place on June 20-22, 2024, in collaboration with Mayo Clinic, at The JW Marriott Mall of America, Bloomington, MN.
This 3-day event is unique in that it is designed to unite all groups committed to improving the lives of those with Dravet syndrome – including families, caregivers, clinicians, researchers and professionals in the pharmaceutical industry. There will be speaker presentations on the latest advances in research as well as sessions with up to date information impacting patient care. This event allows the opportunity to foster new relationships and collaborations, both for families and professionals.
Electrophysiological Biomarkers of GABA in Dravet Syndrome
Movement & Gait Disruptions in Dravet Syndrome
Sleep Disruptions in Dravet Syndrome
Neuropsychiatric Care in Dravet Syndrome
Current Therapeutic Treatment of Dravet Syndrome
Management of Status Epilepticus in Dravet Syndrome
Clinical Trial Updates in Dravet Syndrome
Neurostimulation and Dravet Syndrome
Sessions for Newly Diagnosed Families
These sessions are designed to support families who are newly navigating a Dravet syndrome diagnosis. Gain insights into topics that matter most to you.
Early Diagnosis of SCN1A-Related Epilepsies – Dravet Syndrome and Beyond
Dravet Syndrome Science Primer
Dravet syndrome diagnosis? Connect with the Dravet Syndrome Foundation for information and support.
Sessions for Families with Adult Patients
These sessions will be helpful for families who have a teen or adult patient with the diagnosis of Dravet syndrome. Learn about topics surrounding transition and future planning.
Being Person-Centered: A Workshop for Dravet Families
Caring for Adults with Epilepsy and Dravet Syndrome
Long Term Adult Care Workshop: Daily Life After High School
What Do We Mean When We Say Transition?
Resources for Transition of Care from Parent to Sibling or Other Provider
Long Term Adult Care Workshop: Creating a Life Long Support Network
Treatment and Clinical Care
Current Therapeutic Treatment of Dravet Syndrome
Management of Status Epilepticus in Dravet Syndrome
Neurostimulation and Dravet Syndrome
The Role of Epilepsy Surgery in Children with Dravet Syndrome
Clinical Trials
Clinical Trial Experience and the Importance of Patient Participation
Clinical Trial Updates in Dravet Syndrome
Disease Modifying Therapies: Clinical Trial Readiness in Dravet Syndrome
Genetics & Gene Therapy
AAV-mediated Gene Therapy for Developmental and Epileptic Encephalopathies – Part 1
Reversibility in Dravet Syndrome: A Support to Gene Therapy Studies
Research
Electrophysiological Biomarkers of GABA in Dravet Syndrome
Development of an Anti-Seizure Drug Screening Platform for Dravet Syndrome at NINDS
Neuroimaging Correlates of GABA Metabolism in Dravet Syndrome
Microglia: Novel Targets in Seizure Disorders
Neuropeptides as a Treatment for SCN1A-derived Epilepsy
Comorbidities
Movement & Gait Disruptions in Dravet Syndrome
Sleep Disruptions in Dravet Syndrome
Neuropsychiatric Care in Dravet Syndrome
Behavioral Strategies
Videos for Caregivers
Find Support in Life with Dravet Syndrome
Centering the Good: Finding your voice (and confidence) as the good parent you are!
Sources of Distress: Turning Insights into Advocacy
Coping with Prolonged and Complicated Grief
Carrying Hope and Balancing Reality Workshop
Programs & Resources
Let's Talk Special Education: Considerations for the Dravet Student
Being Person-Centered: A Workshop for Dravet Families
2023 DSF Educational Webinar Series – Medicaid and Waiver Programs
Advocate on behalf of your child
DSF Advocacy Webinar Oct 2024
