Patient Support

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 […]

Partner Focus: EUROIMMUN September 3, 2021

AE Alliance is proud to partner with EUROIMMUN again on the AEA Family Day. Just like last year, EUROIMMUN will be handing out Service Awards for a patient/caregiver and doctor/researcher that had a significant impact on the lives of those affected with AE. EUROIMMUN, whose autoantibody testing panels help patients get an accurate diagnosis, is […]

The importance of complementary therapies in managing Autoimmune Encephalitis August 27, 2021

There are over 100 known autoimmune diseases. Depending on the autoimmune condition, medications may be prescribed to manage symptoms and/or prevent disease progression by suppressing the immune system. The same is true for Autoimmune Encephalitis (AE), starting with first-line immunotherapy (IVIG/PE/steroids) and escalating to second-and third-line therapies, like Rituximab, Cyclophosphamide, and Tocilizumab if first-line therapies […]

AEA Family Day Update August 23, 2021

We are excited to have so many people signed up for the AEA Family Day already. It promises to be a great day of sharing, learning, and doing!  The workshops ‘Managing Cognitive Challenges’, Art Therapy and Mindfulness have reached capacity and are no longer available. However, you can still sign up for Journaling. These workshops […]

Meet Kayla, our Online Engagement Volunteer! August 10, 2021

We are excited to share with you that Kayla Storr will be joining AE Alliance as our Online Engagement Volunteer. She will support the Smart Patients AE online community members.   Meet Kayla! ‘Hi my name is Kayla and I was diagnosed with AE five years ago. I was a senior in high school getting ready for […]

Register Now for the Virtual AEA Family Day August 6, 2021

Please join us on Saturday, September 18th, for the Virtual AEA Family Day! Meet other families going through similar challenges and share stories about your AE journey. Learn about the latest research and discover strategies to manage stress and improve each day. Check out the schedule!  When: Saturday, September 18, 11 – 5 PM EST   […]

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 […]

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 […]

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, […]

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: […]