Patient Support

We are sending virtual hugs! November 19, 2020

November is National Family Caregivers Month, which recognizes and supports all the work caregivers do to support their loved ones with autoimmune encephalitis. There are over 53 million Americans who are unpaid caregivers to family, friends, and neighbors. Caregiving often has a significant impact on the life of the caregiver. It can make maintaining your […]

Novel therapeutics and biomarker discovery May 12, 2021

Over the past 20 years, significant advances have improved our understanding of diagnosis, treatment, and underlying causes of AE. The number of new publications has increased dramatically in the past few years. And here, we will share some recent advances made in the area of novel therapeutics and biomarker discovery. Sell at al., Autoimmune encephalitis: […]

Fellow Survivors Gather at Florence Forth November 25, 2014

I am not a runner. I cringe at the thought of running. So naturally, when Susannah Cahalan told me about the Florence Forth Road Race in Durham NC, I was a bit skeptical. However, when she added that there would be fellow survivors of autoimmune encephalitis attending, I made my decision to go. There were […]

First AEA Support Group Meeting in NY November 18, 2019

  We are excited to announce the first AEA ‘in-person’ Support Group meeting on December 7 at the Port Washington Library located at 1 Library Drive, Port Washington, NY 11050 from 2 pm – 4:30 pm.    The Support Group Leader, Sydney, has organized for Melissa Jensen, M.A., CCC-SLP of Transitions of Long Island to join us as our guest practitioner to discuss cognitive […]

New Year, New Look! January 26, 2021

Our online AE Smart Patients Community has undergone a make-over, making it even easier to search by topic and connect. You can join the community for free to share, interact, and learn from others affected by autoimmune encephalitis in a safe, supportive environment. We started working with Smart Patients in September 2018 to provide our […]

1 in 7,000 May 18, 2021

There are 7,000 rare diseases that affect millions of people. In the USAA disease is considered rare if fewer than 200,000 people are affected by it. Because these diseases are rare, a lot is still unknown. This creates problems in the management of rare diseases, like autoimmune encephalitis, because it leads to misdiagnosis, unmet treatment, […]

AE Families Come Together January 27, 2016

If you are reading this you already know that autoimmune encephalitis can be an isolating experience. That’s one reason the Autoimmune Encephalitis Alliance organizes and hosts the AE Family Lunch in association with the Florence Forth run-walk in Durham, NC. This year the AE Family Lunch will take place on March 5, 2016. All AE patients and families […]

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 […]

Volunteer opportunities! February 10, 2021

We are looking for volunteers to help us manage our online Smart Patients AE community. All you need is a computer, an internet connection, and a passion for helping others affected by AE. The Smart Patients online AE community provides our AE community with a safe online platform to connect with others, from anywhere, at […]

Meet Dr. Juna de Vries! May 20, 2021

Dr. Juna de Vries (Erasmus University – The Netherlands) has been awarded the AEA Community Seed Grant to investigate the Patient Reported Outcomes while Manipulating the Immune System in autoimmune Encephalitis. Learn more about her study and how this will affect those affected with autoimmune encephalitis. You have been awarded the AEA Community Seed Grant, can you tell […]