About EpiLinked

About EpiLinked

EpiLinked is a platform for people living with epilepsy to share their treatment and pregnancy experiences. Our mission is to create a growing, structured database of real-world experiences while fostering a supportive community.

Core Purpose

We collect structured, self-reported data including medications, dosages, seizure frequency, and pregnancy outcomes. This forms the foundation for insights, community support, and research.

Public Visibility

Please note: individual entries are visible to the public and may appear in search engines. Do not include personal identifiers such as your name, address, hospital, or exact location. Your privacy matters, but public visibility means you should share only what you are comfortable with.

Community Contribution

By sharing your experiences, you help others learn from real-world stories. Each entry, comment, and observation enriches the collective knowledge and supports others navigating similar challenges.

Dual Purpose

  •  Structured research-quality data: Standardized entries that allow descriptive analysis of real-world experiences.
  •  Community support: A space to share stories, observations, and practical experiences safely.

Aggregated data is used for research, but individual entries remain publicly viewable. Always share responsibly.

— The EpiLinked Team