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About EDAN

EDAN (the Epilepsy Data & Advocacy Network) is a student-led initiative that uses public data to advance epilepsy awareness, advocacy, and safety. We turn open data and dense clinical, legal, and research material into clear information, tools, and resources for the patients, families, and communities affected by epilepsy.

Our approach

We follow one repeatable model that can be pointed at many different epilepsy challenges:

  1. Map: use open, public data to find where needs and gaps actually are.
  2. Translate: turn complex clinical, legal, and statistical material into plain language anyone can use.
  3. Deliver: put free, ready-to-use resources where they help most, and partner with the organizations already equipped to act at scale.

We do not duplicate the excellent work of existing epilepsy organizations. We use data to point that work, and our own resources, where they are needed most.

Our first project: Seizure-Safe Schools (Minnesota)

Our flagship project applies this model to school safety. Minnesota law (Minn. Stat. 121A.24) asks every public and charter school to have a seizure action plan and trained staff. We found that about 70% of Minnesota school districts do not post a seizure plan that families and staff can actually find, with the gap largest in the smallest, least-resourced districts. See The Data: Mapping the Gaps, look up your district in Find Your District, and find free resources in How to Help. This interactive textbook is part of that project.

Where we are headed

The same data-driven approach extends well beyond schools. Directions we are exploring include:

  • Translating research, turning new epilepsy and neurology studies into plain-language summaries for patients and families.
  • Mapping access to care, using public health data to find where access to neurologists, school nurses, and treatment is thinnest.
  • Awareness and stigma, data-informed materials that counter myths about seizures.
  • Expanding the audit, extending the schools analysis to other states with similar laws.

These are directions, not finished work. If one of them matters to you, we would love to hear it.

Who we are

EDAN was founded by Rishik Kondadadi, a Minnesota high school student. It is run by students and is non-commercial. Everything we produce is free to use and adapt.

Get involved or get in touch

  • Families and schools: see How to Help.
  • Ideas, corrections, partnerships, or to tell us your district adopted a plan: reach out below.

Contact: Rishik Kondadadi, Epilepsy Data & Advocacy Network (EDAN). Email: edanmnorg@gmail.com ยท LinkedIn: https://www.linkedin.com/in/krishikk/

Disclaimer

EDAN's materials are informational and are not legal or medical advice. Where we report on seizure plans, we measure whether they are publicly findable, which is not the same as legal compliance. A person's epilepsy care must be set by their licensed healthcare provider. In an emergency, call 911.