For families affected by Lennox-Gastaut syndrome, Dravet syndrome, or
tuberous sclerosis complex, seizures are only part of the story.

The Behavioral Impact Project is a first-of-its-kind collaboration between the LGS Foundation, Dravet Syndrome Foundation, and TSC Alliance. This large-scale, confidential survey is designed to capture real-world experiences from US-based caregivers who may manage behavioral challenges in addition to seizures.

Your insights will help us:

Develop better resources and tools for families

Educate healthcare professionals on behavioral aspects of rare seizure disorders

Inform researchers, clinicians, and advocacy strategies

Advocate for more recognition and support in treatment plans

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Ready to Share Your Experience?

The survey is:

Completely confidential 

Open to US-based caregivers, family members, and individuals with rare seizure disorders 

Quick and easy—takes about 20 minutes to complete

Please share this survey with anyone in your network who has experience managing behavioral challenges in conjunction with rare seizure disorders.

Send this Survey via Email

Your lived experience is powerful. Thank you for your participation!

This project is made possible thanks to Jazz Pharmaceuticals,
who provided financial support to help bring caregiver voices to the forefront.

Over 50,000 patients, parents, and caregivers have participated in Patient Journeys programs

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Our HIPAA-compliant platform ensures that all personal health information is handled with the highest level of security and confidentiality. You can trust that your data is protected, your communication is secure, and your rights as a patient are respected—every step of the way.