Research

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, […]

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 […]

Meet Dr. Amaia Muñoz Lopetegi! May 26, 2021

Dr. Amaia Muñoz Lopetegi (Hospital Clinic of Barcelona – Spain) has been awarded the AEA Community Seed Grant to investigate the Subclinical activity in anti-LGI1 encephalitis: diagnostic tests and prognostic implications. Learn more about her study and how this will affect those affected with autoimmune encephalitis. You have been awarded the AEA Seed Grant, can you tell us […]

Brain dysfunction and thyroid antibodies: autoimmune diagnosis and misdiagnosis June 18, 2021

Hashimoto encephalopathy (HE) is a rare disorder characterized by impaired brain function. The exact cause is unknown, but experts believe it to be an immune-mediated disorder or a disorder in which inflammation results from abnormal functioning of the immune system. People with HE have antithyroid antibodies in their bodies. However, it is unclear whether these […]

International Consensus Recommendations for the Treatment of Pediatric NMDAR Antibody Encephalitis July 30, 2021

We are excited to report the first International Consensus Recommendations for the treatment of pediatric NMDAR Antibody Encephalitis. The paper results from the hard work, dedication, and collaboration between 27 international AE experts, led by Dr. Margherita Nosadini and Dr. Russell Dale. These treatment recommendations will be of great value to children affected by AE […]

BREAKING NEWS: The ExTINGUISH trial will start recruitment in January 2022! December 1, 2021

We are excited to report that the ExTINGUISH Trial will start recruitment in January 2022. This trial is a Phase-2b, Double-Blind, Randomized Controlled Trial to Evaluate the Activity and Safety of Inebilizumab in Anti-NMDA Receptor (NMDAR) Encephalitis and Assess Markers of Disease. This trial is the result of the dedication and hard work of Dr. […]

2022 AEA Community Seed Grant Program is now open! January 21, 2022

Funded by the Autoimmune Encephalitis Alliance, Inc. (AE Alliance) IMPORTANT DATES Application Deadline: May 2, 2022 Award Notification: Early June 2022 The AE Alliance is pleased to announce the call for applications to our second annual AEA Community Seed grant program to support research focused on the diagnosis, management, and outcomes of individuals with autoimmune […]

Research Opportunity: Living with LGI1? Share Your Experience February 11, 2022

NO LONGER ENROLLING If you are diagnosed with LGI1 autoimmune encephalitis (LGI1) or are the caregiver of someone with LGI1, you may qualify to participate in this study conducted by Fulcrum Research Group. The goal of the study is to better understand the patient experience with LGI1 autoimmune encephalitis for the purpose of supporting potential […]

May is AEA Research Network Month: What is it? May 2, 2022

AEA Research Network Month is when the AE Alliance focuses on research funding, collaborations and AE research awareness. What’s our goal? Raise funds for the 2023 Seed Grant Program. Provide you, the AEA Community a strong understanding of the huge importance of research and AE. What can you expect during May 2022? A better understanding […]

Why Research Network Month? A Conversation with Caterri Woodrum & Meg Poe May 4, 2022

The Research Network launched in May, 2020 and resulted in the first AEA Community Seed Grant Program in 2021. This program supports research focused on the diagnosis, management, and outcomes of individuals with AE. The program is funded by members, friends and supporters of the AE Alliance Community. Would you like to know the answers […]