DSF offers a wide range of educational webinars and videos to support caregivers and families in navigating a loved one’s Dravet syndrome diagnosis. These recordings provide convenient, remote learning opportunities with practical guidance on topics such as diagnosis, clinical care, emerging research, caregiver challenges, and more. Explore curated playlists covering everything from treatment strategies and best care practices to the latest research, featuring presentations from past DSF educational events.
Hosted by the Dravet Syndrome Foundation, this informative town hall highlights the organization’s latest goals, recent accomplishments, and provide updates on ongoing research and development efforts. Attendees will gain valuable insight into the current research pipeline and strategic initiatives aimed at improving the lives of those affected by Dravet syndrome.
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
Learn about the latest best practices in treatment and clinical care for Dravet syndrome.
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
Gain a deeper understanding of the current clinical trial landscape in Dravet syndrome, including ongoing and upcoming studies, emerging therapies, and how participation in research is helping to shape the future of treatment and care.
Clinical Trial Experience and the Importance of Patient Participation
Clinical Trial Updates in Dravet Syndrome
Disease Modifying Therapies: Clinical Trial Readiness in Dravet Syndrome
Dravet Genome Study Informational Webinar
Genetics & Gene Therapy
Learn more about the genetics involved in Dravet syndrome and explore the rapidly evolving field of genetic therapies, including gene-targeted approaches, disease-modifying strategies, and the promise of precision medicine aimed at addressing the root cause of Dravet syndrome.
AAV-mediated Gene Therapy for Developmental and Epileptic Encephalopathies – Part 1
Reversibility in Dravet Syndrome: A Support to Gene Therapy Studies
Research
Learn more about the most promising research advancing the field of Dravet syndrome (DS), including novel therapeutic approaches, disease-modifying strategies, and innovative technologies aimed at improving seizure control and overall outcomes.
First and Proven…The Evolution and Foundational Legacy of Stiripentol
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
Learn about the wide range of health comorbidities commonly seen in individuals with Dravet syndrome and gain a deeper understanding of how these co-occurring conditions impact daily life.
Movement & Gait Disruptions in Dravet Syndrome
Sleep Disruptions in Dravet Syndrome
Neuropsychiatric Care in Dravet Syndrome
Behavioral Strategies
Learn about behavioral challenges in Dravet syndrome and the Brain-First Parenting approach, which focuses on the neurological roots of behaviors to guide personalized interventions and support quality of life.
Videos for Caregivers
Caring for a loved one with Dravet syndrome can be emotionally and physically challenging, often bringing stress, fatigue, and feelings of isolation. These videos offer guidance, support, and practical strategies to help caregivers navigate daily challenges, manage stress, and connect with resources and communities that understand their journey.
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
Discover programs and resources designed to support both your loved one with Dravet syndrome and you as a caregiver. Explore educational tools, community networks, therapeutic services, and practical guidance that can help manage daily challenges, enhance quality of life, and provide the support and connection you need along your journey.
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
These sessions are designed to empower you with the knowledge, tools, and strategies needed to confidently advocate for your child with Dravet syndrome and your family.
2025 Fall DSF Advocacy Webinar
DSF Advocacy Webinar Oct 2024