Education

Working together to ensure best outcomes for AE patients. October 8, 2020

Dr. Pojen Deng and Dr. Anusha Yeshokumar (Mount Sinai Health System) discuss autoimmune encephalitis and a multidisciplinary approach to AE Care for the Psychiatric Times Health Minute. They also discuss long term management strategies, including recognition of broad psychosocial ramifications as well as individual cognitive and psychiatric sequelae. https://www.psychiatrictimes.com/view/collaborating-best-outcomes-patients-autoimmune-encephalitis

Caregiver burden in anti-NMDA receptor encephalitis June 2, 2020

A group of doctors led by Dr. Anusha Yeshokumar have assessed care transitions and caregiver burden among caregivers of individuals with anti-NMDA receptor encephalitis (anti-NMDARE). Surveying caregivers about their experience caring for those with anti-NMDARE and their perceptions of disease progression and recovery provides a unique opportunity to assess aspects of care for patients who […]

What is a registry? April 30, 2020

This morning we posted a video of Dr. Heather Van Mater on our social media, where she talks about a registry as an area of opportunity to advance AE Research. But what is a registry? Rare diseases present unique challenges for researchers and companies working towards treatments and cures; small and scattered patient populations, difficulty […]

What is AE? April 9, 2020

‘What is AE?’, seems like an easy question to answer, right? AE refers to conditions where the body’s immune system, whose job is to fight infection, mistakenly attacks healthy brain cells causing neurologic and psychiatric symptoms. But what does that really mean? And what if you or a loved one gets this diagnosis and everything […]

World Encephalitis Day 2020 Conference November 29, 2019

AE Alliance is proud to be joining forces with The Anti-NMDA Receptor Encephalitis Foundation, Encephalitis 411, the Encephalitis Society, HESA, and Encephalitis Global in organizing the World Encephalitis Day 2020 Conference in Dallas, TX. The World Encephalitis Day 2020 Conference welcomes survivors and caregivers to attend and interact while celebrating World Encephalitis Day. We feel very fortunate to have […]

Ask the Panel September 10, 2019

AE Alliance receives questions on a daily basis from patients and caregivers on diagnosis, treatment, recovery, and research. Sometimes these questions are very specific, but often they will apply to a lot of patients and caregivers. Starting in October, we will have a new segment in our newsletter: Ask the Panel. Your question will be […]

Autoimmune Encephalitis Day of Strength May 26, 2019

Texas Children’s Hospital will hold their AE Day of Strength on July 27 in Houston TX and you are invited to join! The AE Day of Strength will allow patients and their families to hear disease updates, discuss coping strategies and connect with other AE families. There will be special activities to honor all siblings. […]

AEA Family Day 2022 October 14, 2022

We are excited to announce the Fall AEA Family Day (mini). Instead of a single, full-day, AEA Family Day, the AE Alliance and our program sponsor, EUROIMMUN offer several mini-days throughout the year. This gives us the opportunity to respond to topics that are important to you throughout the year. The Fall AEA Family Day […]

Antibody associations in 2750 children with suspected autoimmune encephalitis February 12, 2024

Making the diagnosis of autoimmune encephalitis (AE) can be very straightforward when the patient develops features that are highly characteristic of a particular AE. For example, a 30-year old woman with new onset psychiatric symptoms such as hallucinations or strange behaviors and who also has repetitive movements around their mouth in their face (known as […]

Clinical Approach To The Diagnosis Of Autoimmune Encephalitis In The Pediatric Patient June 20, 2023

We were recently asked to post and comment on the proposed pediatric autoimmune encephalitis (AE) classification criteria published in 2020. The pediatric criteria followed much of the framework of the adult criteria, but highlighted important difference between pediatric and adult presentations. In addition, the pediatric criteria started from the point of the initial assessment, with […]