Patient Support

Clinical outcomes of pediatric Anti-NMDA receptor encephalitis February 27, 2021

https://pubmed.ncbi.nlm.nih.gov/33046392/

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 […]

Smart Patients online AE community September 5, 2018

We have just partnered with Smart Patients, to create an online support community for patients and caregivers affected by AE. We receive so many questions on diagnosis, treatment and recovery, we thought we could help more people by bringing them together in a safe online community. Here you can ask questions, share experiences, gain insight […]

Long-term Psychosocial Outcomes in Anti-NMDARE May 18, 2020

A group of doctors led by Dr. Anusha Yeshokumar has assessed the long-term impact of anti-NMDA receptor encephalitis (anti-NMDARE) on psychosocial outcomes, or emotional and social well-being. Adolescents and adults with self-reported anti-NMDARE were invited to complete an online survey distributed by the Autoimmune Encephalitis Alliance and the Encephalitis Society in 2018. The survey was […]

2021 AEA Seed Grant Final Report: Dr. Amaia Muñoz Lopetegi May 26, 2022

It was May 26, 2021 when we introduced Dr. Amaia Muñoz Lopetegi. Click here for last year’s post where we learned about her, her study plans and how her project would help patients and families affected by AE. In the 2021 AEA Community Seed Grant Final Report, Dr. Munoz-Lopetegi explains the outcomes of her project, […]

We Appreciate You! November 24, 2018

With Thanksgiving upon us in the US and the holiday season approaching, here at the Autoimmune Encephalitis Alliance we want to take a few minutes to express our heartfelt gratitude to the many people who make fighting this rare illness possible: Thank you to the people affected by AE and their families and friends, who […]

Calling all caregivers of children age 14-26 diagnosed with AE June 23, 2020

Hashimoto’s Encephalopathy Streat Alliance (HESA) and AE Alliance are teaming up to support you and your child with the transition from pediatric to adult AE care. Moving from pediatric to adult care in the health care system can be a complex and emotional process, especially when your child has a rare disease. A few key […]

2021 AEA Community Seed Grant Final Report: Dr. Juna de Vries May 24, 2022

It was May 20, 2021 when we introduced Dr. Juna de Vries . Click here for last year’s post where we learned about her, her study plans and how her project would help patients and families affected by AE. In the 2021 AEA Community Seed Grant Final Report, Dr. de Vries explains the outcomes of […]