Patient Support
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 […]
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 […]
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 […]
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, […]
It was October 11, 2022 when we introduced Dr. Leigh Sepeta & Dr. Elizabeth Wells. Click here for their introductory post where we learned about them, their study plans and how their project would help patients and families affected by AE. In the 2022 AEA Community Seed Grant Final Report, Dr. Leigh Sepeta explains the outcomes of […]
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 […]
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 […]
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 […]
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 […]
The AE Alliance is excited to partner with the University Hospitals Neurological Institute, Hashimoto’s Encephalopathy/SREAT & Seronegative Autoimmune Encephalitis Alliance (HESA) and Encephalitis411 to present and in-person AE Day: “Strides in Autoimmune Encephalitis.” This assembly is an all-day event focusing on pediatric and adult autoimmune encephalitis (AE) for clinicians, caregivers, and the survivors impacted. We […]