Own Your LGS Loved One’s Medical Records (Phase 1)

Your medical records tell a story, one that can help shape future LGS treatments.

It’s time for you to own your medical records, so we’ve partnered with Citizen Health platform – a secure digital platform for storing all of your existing medical records, controlled by you, at no charge. You’ll get access to all your medical records in one place. If you choose to share de-identified and summarized medical history with researchers through your account, the information from your records will help us gain a better understanding of LGS and get us closer to disease-modifying treatments.

Why Sign Up?

  • To gain easy access to existing health records in one secure digital account.
  • To help advance research, inform a better understanding of LGS, and improve clinical trial design.
  • To own your health records and control who sees it. (Pro Tip: Periodically download your records to your computer and/or thumb drive to ensure you always have access to the most up to date version)

What You Need to Know:

  • Signing up is free.
  • This is currently for US patients only.
  • It only takes about 15 minutes to sign up.
  • Before you sit down to sign up, gather the following:
    • Computer or mobile phone with camera
    • Your Photo ID – Drivers License or Passport
    • Hospital or doctor where your loved one received the LGS diagnosis
  • When asked for the primary diagnosis, please select Lennox-Gastaut Syndrome (LGS).

Have Questions or Need Support?

SIGN UP NOW – THIS WILL TAKE YOU TO CITIZEN PLATFORM

WATCH THE INFORMATIONAL LGS COMMUNITY WEBINAR

Additional Resources:

LGS Learn from Every Patient Database

Implemented in 2023, the LGS Learn from Every Patient Database collects medical records about those with LGS to document the impact of LGS on a person’s health over their lifetime. This information can be used to help understand what treatments work in LGS, how LGS Associated Disorders, such as sleep, communication, feeding, and behavioral issues, are managed, and how LGS evolves with aging.

The LGS Learn from Every Patient Database consists of three phases:

CLICK HERE TO LEARN MORE

Updated 09/24/24 (KK)