Blog

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. […]

Use and Safety of Immunotherapeutic Management of N-Methyl-d-Aspartate Receptor Antibody Encephalitis: A Meta-analysis This paper results from the hard work, dedication, and collaboration between the International NMDAR-antibody Encephalitis Consensus Group and other experts in the field, led by Dr. Margherita Nosadini, Dr. Michael Eyre, and Dr. Ming Lim. The paper aims to answer what treatments are […]

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 […]

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 […]

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 […]

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 […]

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   […]

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 […]

Refuel You is a 10-week health and wellness program to help rejuvenate you following your AE journey. This online program incorporates movement, mindfulness, group support, and health coaching.  We have aimed this first cohort at our caregivers because we all know AE affects the whole family. Normally this program would cost $300 per person for ten […]

In 2018 Lisa, Marie’s mom, shared her daughter’s journey with AE on our website. Today, she is happy to share an exciting update.  Marie’s has come a long way from her hospital stay in 2018 with the medication changes. This has made a big difference in 2019, the medication took about a year to adjust […]