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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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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Autoimmune Encephalitis - Anti-NMDAR - Alex's Story

I received a call from Alex complaining that she had something buzzing in her ear and that it is making her uncomfortable. On the same day in the afternoon, I received a call from my sister telling me that Alex had collapsed and she was brought to the nearest hospital. When she woke up, the hospital staff, without proper diagnosis, wrongly accused her of taking prohibited drugs just because she was shouting, hallucinating and was very disoriented.

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Infectious Encephalitis Lived Experience - Ava's Story

In July 2024 we had returned from a family holiday. Ava, at the time, was 4 months old and we'd noticed that she had been irritable, had developed sores near her mouth (later identified as the Herpes Simplex Virus type 1) and one day suffered a 20 minute focal seizure.

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Upcoming Events

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Family Resilience Day

Please note that this event is now postponed until next year (2026). Exact dates and location to be announced in Autumn. If you are interested, please put your name on the waiting list by emailing Julie at julie@encephalitis.info  Having details about kids’ ages and requirements would be very helpful for us to plan this event. […]

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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