Malcolm and his family

Patient Community

We know it takes a community to develop and deliver new therapies. We also recognize the vital role the patient community has in this process and are committed to collaboration throughout so that together we can transform hope into possibilities.

Patient Communities of Focus

We live out our mission of patient focus by collaborating with the patient community around shared goals, supporting education, research, and other community initiatives, and ensuring that families have access to information needed to make an informed decision around care and treatment.

Encoded is developing investigational gene therapies for pediatric central nervous system disorders. We invite you to learn more about our areas of focus and ongoing clinical studies.

Dravet Syndrome

Dravet syndrome, a rare developmental and epileptic encephalopathy, is a severe, lifelong disorder of the central nervous system.

Community Stories

The patient community knows first-hand what it means to coordinate care teams, manage medications, seek hope in clinical studies, and navigate the world while also living with or caring for someone with a pediatric central nervous system disorder.

Connect with Encoded’s Patient Advocacy & Engagement Team

Patient advocacy & engagement is all about building trusting relationships within the patient community and creating active and impactful collaboration around the development and delivery of innovative therapies. At Encoded this is not just one function’s responsibility, but rather, that of every employee.

Our Patient Advocacy & Engagement team is here to support these companywide efforts and serve as a bridge between Encoded and the patient community.

If you are interested in learning more about our activities with the patient community or connecting with a member of our Patient Advocacy & Engagement team, please email By providing your information, you agree to allow Encoded to collect the name and email address provided and to be contacted by Encoded and its partners using this information.