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Patient Survey Opportunities

Patient/Caregiver Survey Opportunities

Patient surveys provide an opportunity to gather valuable feedback from patient families about their experiences and unmet needs. The insights gained from these surveys can be used to identify areas for improving the quality of care and to better understand challenges. By participating, you have the opportunity to share your perspectives, which will help identify areas for improvement and guide efforts to enhance care and support for those affected by Dravet syndrome.  
 
Some of these opportunities provide compensation as a token of appreciation for your time and valuable insights. Compensation details may vary depending on the specific survey or project. Please review the information below carefully to understand the eligibility criteria, the type and amount of compensation offered, and how it will be distributed.  

Current Surveys

Help Us Understand the Impact of Behavioral Challenges in Rare Seizure Disorders

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For individuals living with Lennox-Gastaut syndrome (LGS), Dravet syndrome, or tuberous sclerosis complex (TSC)—and the caregivers who support them—seizures are only part of the challenge. Behavioral challenges can also be disruptive—and far less supported.

That’s why we’re launching The Behavioral Impact Project: Amplifying Caregiver Voices– a large-scale survey designed to capture real-world caregiver experiences with harmful or disruptive behaviors in rare seizure disorders.  We aim to include hundreds of caregiver voices.

For this project, the Dravet Syndrome Foundation is partnering with the LGS Foundation and the TSC Alliance.

Your input will enable us to:

  • Create resources for caregivers to help better manage behavioral challenges.
  • Make information available to clinicians, researchers, and advocacy groups to guide strategies for intervention and support.
  • Educate Healthcare Providers, promoting better understanding of the behavioral challenges associated with rare seizure disorders.

Share Your Voice

The survey is confidential, takes just 20 minutes, and can help make a lasting difference.

👉 Take the Survey Now

Spread the Word

Share this initiative with fellow caregivers and families to increase participation. Visit this link and enter email addresses to send an invite to participate. Together, we can advocate for the recognition and resources our community needs.

Our thanks to Jazz Pharmaceuticals for their financial support of this important work.

Theta Neurotech is developing a 24/7-wearable system that may be able to predict and alert patients of their impending seizures *before* they occur. The system includes small patches applied (like a sticker) behind the ear, as well as a mobile app that is responsible for alerting patients and caretakers when a seizure is predicted. They are looking for caregivers to offer feedback on their technology. You can complete the survey at this link.

Posted date:  Feb 1, 2025
End date:  TBD

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