Dravet Syndrome and Your Family: Diagnosis, Treatment, Family Issues/Needs and Support – a NeuroCareLive Series

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 watch, 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.

Speakers: Elizabeth Thiele, MD, PhD, Director, Carol and James Herscot Center for Tuberous Sclerosis Complex, Patricia Bruno, RN, BSN, Pediatric Epilepsy Program, Abby Hemani, Mary Anne Meskis, Executive Director, DSF

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Module 1 - Raising awareness: A Guide to Signs and Symptoms in the Early Years of Life
   
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Module 2 - Diagnosis Received What’s Next? –Being Prepared to Provide Support
   
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Module 3 - Family Matters Demands on the Immediate Family and Relatives
   

Speakers: Elizabeth Thiele, MD, PhD, Director, Carol and James Herscot Center for Tuberous Sclerosis Complex, Patricia Bruno, RN, BSN, Pediatric Epilepsy Program 

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Module 4 - Effective Therapy: What Are My Child’s Options Now & In The Future?
   
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Module 5 - Dravet in Transition: What Happens When A Child is Ready for Adult Care?
   
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Module 6 - Managing Caregiver Burden: Balancing Needs and Accessing Support Resources
   
Chapter 1: The Burden of Dravet Syndrome from a Caregiver’s Perspective
Now Available On Demand!
Hear a dialogue between medical specialists and families facing Dravet Syndrome. Together the panelists will present to both families managing DS and clinicians treating DS, on topics including:
  • Differences between the stages of DS
  • Developmental and behavioral changes that can accompany DS
  • The impact of a diagnosis on the whole family, and supportive resources for caregivers

Speakers: Nicole Villas, Kelly Knupp, MD, Meghan Wilson, Dagmar Amtmann, PhD

    Video 1        
Humanistic and Economic Burden of Dravet Syndrome: Multidisciplinary Approach to Recognize and Address