Encephalitis International

Patients, Pioneers & Progress

The next discovery starts with you.

We are at a critical moment to invest in encephalitis research. In the first ever Technical Brief on encephalitis, published in February 2025, the World Health Organization describes encephalitis as a “growing global threat” and “an urgent public health imperative.”

Cases are rising. New autoimmune types continue to be discovered, and infectious causes continue to spread.

Together, by funding research, we can save and rebuild lives.

Find out more about our current research appeal

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Three people every minute are diagnosed with encephalitis.

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Our mission is to rebuild futures around the world by saving lives, accelerating awareness and driving research.

What is encephalitis?

Encephalitis is an inflammation of the brain. It is caused either by an infection invading the brain (infectious encephalitis) or through the immune system attacking the brain in error (post-infectious or autoimmune encephalitis).

Your Stories

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Autoimmune Encephalitis Lived Experience - A mother's story

On arrival he was quickly admitted with suspected meningitis and started on IV antibiotics. The next couple of days were a bit of a blur. He tested positive for Strep A and a virus, so was also started on antivirals too. His lumbar puncture was thankfully negative for meningitis so we were hopeful it was just a couple of nasty bugs which had wiped him out and he would start to improve. And in many ways, he did seem to improve, he was less agitated and even trying to eat, but at the same time he was growing weaker, he lost control of his bladder, and we couldn't get him to talk.

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Acute Disseminated Encephalomyelitis (ADEM) - Madison's Story

I started having dizziness, headaches and blurry vision but I was dismissed as being fine. I began getting paranoid and hallucinating. I was typing messages that were just scribbled letters. Within the next couple of days, I was alone in a house, dog sitting.  I fell asleep and slept passed my alarm but eventually woke up and felt even more confused. Nothing that was familiar looked familiar and nothing made sense. I had to meet my mom somewhere, so I got in the driver’s seat forgetting my phone.  The car looked like it made no sense. I remember being confused in the driveway about the gears and about how to drive, but somehow, I did it although I don’t remember much of the drive.

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Herpes Simplex Virus Encephalitis - Laura and Levi's Story

We were told that Levi was experiencing the new Covid-19 strain symptoms. We were sent away with paracetamol and told to come back the following day for a lumbar puncture but Levi didn't want to go back to the hospital the following day. His symptoms continued for a couple of more days. I remember him sleeping in bed, occasionally vomiting, not keeping anything down. One particular night, around 1am, he jumped up out of bed, he ran over to the wardrobe doors and flung them all open. He was grabbing at thin air, behaving erratically and bizarrely. I was terrified and had no idea what was going on. I immediately dialled 999 and explained that he appeared to be hallucinating, he was behaving really strangely. I had never been so scared in all of my life.

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Upcoming Events

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Seizures and encephalitis FREE webinar - patient event

Please note that this is an event aimed at patients. Programme 2.00pm (GMT) – Seizures and Encephalitis in Adults.  Dr James Mitchell MBChB, MRCP, Association of British Neurologists (ABN), Clinical Research Fellow and neurology registrar, University of Liverpool and The Walton Centre NHS Foundation Trust, UK 2.45pm (GMT) – Seizures and Encephalitis in Children.  Dr […]

6 November 2025
Online
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Encephalitis 2025 - Registration

3rd and 4th December 2025 Royal College of Physicians (RCP), London and virtually (Please note the attendance is both in-person and virtual. Those who register will be able to watch the Conference sessions on demand for 60 days after the event) Registrations are now open! (in-person and virtual tickets are available) Book your tickets here   […]

3 - 4 December 2025
Hybrid
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Illustration of two scientists and a human brain

My Brain & Medicine, Sweden

Please note this is a FREE in-person event only for patients diagnosed with encephalitis, their family members and caregivers. Venue: Elite Hotel Carolina Tower, Eugeniavägen 6, 171 64, Stockholm, Sweden  Room: Wilhelm Röntgen Hall Date:  Monday 26 January 2026 – 12.30 – 18.30hrs (CEST) (exact timings to be confirmed) Most of this event will be […]

26 January 2026
Sweden
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