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

Brain and light bulb illustration

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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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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Bickerstaff Brainstem Encephalitis - Rebecca's Story

I spent the next day in bed, barely able to walk without intense feelings of vertigo - my vision was blurred, balance was off, and I felt incredibly nauseous. I was wheeled off to the hospital in an ambulance at around 1 am and can remember lying in hospital very scared and ill, with lots of beeping and voices all around me. My vision seemed to fade at one point, and after that, everything is entirely blank. My only rather frustrating memory is being told to ‘walk it off’; luckily, my family were able to flag down a lovely nurse who saw how ill I was before taking me to the ICU. There was much worry about a tropical disease causing my symptoms, hence the speed of my admission to the intensive care unit.

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Autoimmune Encephalitis Lived Experience - Philippa's Story

It was terrifying. The uncertainty, the not knowing what each day would bring, was one of the hardest parts. He spent six long months in hospital, followed by a further eight months in a rehabilitation centre. Those fourteen months were filled with fear, exhaustion, hope, and small victories that meant the world to us. Our story is still continuing and if I’m honest, it’s been nothing short of a rollercoaster.

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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.  Speaker […]

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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