If you’ve ever walked into a clinic and struggled to explain your epilepsy story clearly, trust me — you’re not alone. I’ve lost count of how many times I’ve blanked on dates, skipped important details, or left wishing I’d said more. That’s exactly why we built the Patient Portal.
The Portal is a free online system for Persons With Epilepsy (PWE) anywhere in the world. It helps you build your own personalized Patient Profile — basically your epilepsy story, neatly structured and ready to share with doctors, family, or caregivers. It’s designed with privacy and dignity at the heart, because I know how personal this condition is.
Here’s how it works: you register for free, then answer guided questions about your seizure history, triggers, auras, medications, and lifestyle. Once you submit, our global team of medical volunteers reviews your answers and helps shape your profile into something clear and useful. When it’s ready, you download it and take it with you to clinic visits. And if anything changes, you just log back in, update your info, and resubmit. Simple.
Why is this such a big deal?
Because epilepsy is deeply personal. No two people’s seizure patterns are the same. Your profile captures those unique details so nothing gets lost in translation. Clinicians also get clear, structured information that helps them make faster, more accurate decisions. And honestly, it gives you a voice. Instead of fumbling through explanations under pressure, you’ve got everything written down, ready to hand over with confidence.
And of course, privacy is non-negotiable. All your data is stored securely and only trusted Seizure Support medical volunteers can review it.
For me, this Portal represents something bigger: it’s about taking ownership of our health journey, making clinic visits smoother, and giving each of us the confidence to speak up. If you haven’t tried it yet, sign up and build your profile — it’s free, and it genuinely makes a difference. To access the patient portal, CLICK HERE.
This issue is discussed in detail in the Epilepsy Management Guide, which you can download for free. To participate in the discussion on this topic, visit the Global Epilepsy Forum. To know more about what we do, please click HERE. We also have a donation page where those who feel compelled can give whatever they can afford by clicking HERE.
