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Take the Next Step in Support – Apply for a Caregiver Connect Grant!
Being a caregiver for someone with Dravet syndrome can feel overwhelming. It’s easy to feel like no one else understands our day to day experiences ...
Our Patient Assistance Grants Are Here to Help Your Family!
Our Patient Assistance Grant program (also known as PAG) has been a part of our advocacy efforts at DSF since 2009. We recognize how difficult ...
NINDS 75th Anniversary
In 2025, the National Institute of Neurological Disorders and Stroke (NINDS) marks its 75th anniversary, celebrating a legacy that began in 1950. This milestone underscores ...
From Discovery to Delivery: How Science and Policy Are Shaping a New Era for Gene Therapy
Scientific advances in gene and cell therapy are moving fast. CRISPR-based therapies are being developed in record time to help children with life-threatening conditions. At ...
Why Can One Child Get a Groundbreaking Treatment – But Not Thousands Like Mine?
A recent medical breakthrough resulted in the successful treatment of a child with a rare genetic disorder with a personalized CRISPR gene editing therapy developed ...
From Heartbreak to Hope: A Family’s Mission to Catch a Cure for Dravet Syndrome
I never imagined I’d become the parent of a child with a rare disease. I never pictured a life built around emergency medications, seizures, feeding ...
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