Encephalitis International

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).

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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.

Your Stories

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LGi1 Autoimmune Encephalitis - Graeme's Story

Graeme shares his lived experience of LGi1 autoimmune encephalitis. Graeme shares his experience of developing sudden, involuntary spasms in early 2022 that gradually worsened and disrupted his daily life. Despite repeated medical consultations, his symptoms were misdiagnosed or overlooked for nearly two years. The episodes, later identified as dystonic seizures, were triggered by stress, fatigue, and everyday activities.

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Herpes Simplex Virus Encephalitis - Adey's Story

What came next was a horror story and the experience of physical, mental and emotional torture. My symptoms intensified. Confusion, mental fog, extreme fatigue, severe headache, non stop cyclical vomiting, unbearable abdominal pain, my throat inflamed now unable to swallow my saliva without intense burning, and excruciating pain with touch that ran through my body like fire when sensory neurons/pathways were glitched (hyperesthesia/allodynia).

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Acute Disseminated Encephalomyelitis (ADEM) - Rosie's Story

Rosie shares her story of growing up after developing Acute Disseminated Encephalomyelitis (ADEM) at the age of six. After suddenly collapsing at school and spending time in intensive care, she faced significant physical challenges, particularly with balance, strength, and walking. Through rehabilitation, family support, and patient-centered care, Rosie gradually regained mobility and confidence.

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Upcoming Events

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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) Most of this event will be presented in Swedish and the […]

26 January 2026
Sweden
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World Encephalitis Day Alliance Conference Empowering Hope 2026

Please note that this event is an in person event taking place in Denver, United States Overview Join the World Encephalitis Day Alliance for a day of hope, empowerment, and unity at the World Encephalitis Day Alliance Conference 2026 – you won’t want to miss it! Welcome to the World Encephalitis Day Alliance Conference, Empowering […]

20 - 22 February 2026
Embassy Suites by Hilton Denver International Airport
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