Encephalitis International

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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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Acute Necrotising Rhombencephalitis Lived Experience - Eldon's Story

In April 2023, life as I knew it changed in an instant. It began with an ache in my lower back—something I brushed off as a minor strain. I even visited an osteopath, convinced I had just overdone it somehow. But the discomfort didn’t ease. Within days, I tested positive for COVID-19, and soon after, the real nightmare began.

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Anti-NMDAR Encephalitis Lived Experience - Alice's Story

I was a healthy 27 year old woman who loved paddled boarding and aerial circus prior to being diagnosed with Anti-NMDAR Autoimmune Encephalitis. I was on a weekend away with my mother and partner in England and complained of sore ears. Later that night I took my first seizure and an ambulance was called! My symptoms began suddenly, manifesting with seizures, manic psychotic episodes, hallucinations, agitation and oral facial dyskinesia.

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Tick-Borne Encephalitis Lived Experience - Antti's Story

I got tick-borne encephalitis in autumn 2023, here some memories and insights of the complex journey with the disease. The whole thing started in a Teams meeting with a customer. I suddenly felt quite nauseous and had to close the meeting early, started to vomit and horrible headache begun. Luckily, I was at home and my wife came soon to check my situation. Later, I heard that she took me to an emergency unit at the University center hospital next day when my fever raised up to 41 ˚C – I don’t have any clear memories of that.

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Upcoming Events

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Family Resilience Day

UK in person event. Please join the Encephalitis International staff team and community at our Family Resilience Day Date:  Saturday 13 September 2025 Aston University Students Union, Birmingham, UK This event is aimed at families whose child/young adult has been affected by encephalitis.  We will be launching our new reviewed educational resources for primary and […]

13 September 2025
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My Brain & Medicine - New York, United States

Please note this is a FREE in-person event only for patients, family members and caregivers. My Brain & Medicine. Encephalitis Survivors and Caregivers Day Venue: New York-Presbyterian/Columbia University Irving Medical Center, 50 Haven Avenue, Suite 109 , New York, NY 10032, USA Room:  50 Haven Ballroom (in the Lower Level) Friday 26 September 2025 – […]

26 September 2025
Columbia University Irving Medical Center, 50 Haven_Suite 109 , New York, NY 10032, United States
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My Brain My Story 2025

Please note My Brain : My Story is a hybrid event (in-person and virtual via Zoom) We would love you to join us in York, England, – or virtually – at My Brain : My Story on Saturday 4 October 2025. This event is a hybrid event for anyone who wants to listen to the […]

4 October 2025
The Grand, Station Rise, York, YO1 6JD
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