Inspiring families living with Dravet syndrome to move forward with confidence

Real reflections from real caregivers

Learning about the experiences of families living with Dravet syndrome can make all the difference for caregivers and loved ones. That’s why we compiled advice from real caregivers about managing daily life, sibling support, and more to create this resource. Our goal is for families to feel supported and prepared to take on each day.

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Rosie, 3, with her dad

New to Dravet?

Finding out your loved one has Dravet syndrome is not an easy journey. It can involve multiple specialists, delayed diagnosis and plenty of patience. However, you can take comfort in knowing you have an entire community behind you every step of the way.

Resources to Get Started

Below are links to some helpful resources from the Dravet Syndrome Foundation (DSF) to support you and your loved ones.

Mia, 16, at home

If you are new to Dravet: Explore the DSF’s resources for families with a new diagnosis

Get started

If your loved one with Dravet syndrome has siblings: Receive resource kits from the DSF and UCB to support siblings and their families

Sign up for a kit

If you are looking for doctors who have experience with Dravet syndrome: Locate a neurologist near you through this DSF resource

Find my doctor

Additional resources for your family at each step of your path with Dravet syndrome

Explore resources

Get support and inspiration from other parents and caregivers from Shine Forward With Dravet

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