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.
These videos highlight the latest guidelines in clinical care.
The development of this updated professional educational series by the Dravet Syndrome Foundation was prompted by the recent publication of the International Treatment Consensus on Diagnosis and Management of Dravet Syndrome.
This video series is made possible thanks to educational grants from: Biocodex USA, Jazz Pharmaceuticals, Takeda, and UCB.Â
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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 a DSF’s shared vision for a better outcome for those affected by Dravet syndrome.
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DSF’s 5th Biennial Conference took place on June 23-25, 2022, in collaboration with Cook Children’s Medical Center, at The Worthington Renaissance, Fort Worth, Texas.
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.
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Sessions for Families New to Diagnosis
These sessions will be helpful for families who are new to the diagnosis of Dravet syndrome. Learn about topics you have heard about and get accurate information to help you make confident and appropriate decisions on what will be helpful for your child’s care. Sessions are presented by community experts – including other parents.
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Videos for Caregivers
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Genetics & Gene Therapy
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Treatments for Dravet
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Research & Registries
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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. Sessions are presented by community experts – including other parents.
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Brain-First Parenting Workshop
This 9-hour workshop is led by Eileen Devine, LCSW, a neurobehavioral support coach for parents. Eileen Devine is a therapist, neurobehavioral consultant, and mother to a child with a neurobehavioral disability that has challenging behavioral symptoms. She has her License in Clinical Social Work and is a certified facilitator in the teaching and application of the neurobehavioral model, as developed by FASCETS founder, Diane Malbin. She has also completed Tier 1 training in Think:Kids Collaborative Problem Solving. Eileen is an instructor for the Post-Master’s Certificate in Adoption and Foster Therapy through Portland State University’s Child Welfare Partnership, training other therapist on the neurobehavioral model. Special thanks to the Dravet syndrome caregivers who so openly and honestly shared their challenges in this webinar series.
Accompanying session materials can be found here.
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Comorbidities
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Dravet Stories
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Clinical Trials
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Sudep & Tissue Donation
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Conferences
Featured videos from past DSF conferences, presented by top clinicians and researchers on relevant topics for the Dravet syndrome community.Â
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Fundraisers & Events
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Programs & Resources
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Behavioral Strategies
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Diagnosis, Treatment, Family Issues/Needs and Support
This free 6-part video education series provides an in-depth exploration of the impact Dravet syndrome can have on patients and their families while covering topics like diagnosis, treatment, family needs, support and more. Dr. Elizabeth Thiele, Professor of Neurology at Harvard Medical School and Director of the Pediatric Epilepsy Program at Massachusetts General Hospital leads a discussion with an expert speaker panel that includes a nurse, caregivers and a research coordinator.
Specific topics to be addressed include:
- Raising Awareness: A Guide to Signs and Symptoms in the Early Years of Life
- Diagnosis Received: What’s Next? – Being Prepared to Provide Support
- Family Matters: Demands on the Immediate Family and Relatives
- Effective Therapy: What Are My Child’s Options Now and in The Future?
- Dravet in Transition: What Happens When A Child is Ready for Adult Care?
- Managing Caregiver Burden: Balancing Needs and Accessing Support Resources
To view this video series, click here. Then simply add your name and email, click ‘Watch Now’ below, then play the video. You will be brought to a page with a few short multiple-choice questions. Provide your responses and click ‘Submit’ when you’re ready to view. To download the slides that accompany the video, click on ‘Event Resources’ below the video player after you’ve signed in.