Empowering Autoimmune Encephalitis patients, caregivers, and families through support and education.
Knowledge, courage, and comfort for the journey.
For patients & families
A compassionate guide combining medical insights with practical support for patients and families navigating AE.
For young readers
Meet Ima, a brave zebra whose story offers courage and comfort to children facing rare or chronic illness.
Autoimmune Encephalitis (AE) affects more than just the body—it impacts lives. With the right information, guidance, and resources, we’re here to help patients and their loved ones navigate this journey with confidence and hope.
Facing an AE diagnosis can feel isolating, but you don’t have to go through it alone. From understanding symptoms to finding the right specialists and treatment plans, we’re here to ensure you have access to the knowledge and support you need to take the next step forward.
Autoimmune Encephalitis Warriors, (patients) often require rehabilitation due to an acquired brain injury (ABI). The neurologist will refer the AE patient for a neuropsychological evaluation to see what areas of the brain are not functioning properly.
Deficits the patient experiences in cognitive domains show a slow and incomplete recovery and may slowly improve even years following the end of treatment. It is not uncommon for a patient to need several months of convalescence with intensive rehabilitation.
Learn what AE is and its impact on the brain.
Understand AE in children and their unique care needs.
Identify key symptoms and stages of AE.
Explore different forms of AE and their causes.
Access treatments and resources to manage symptoms effectively.
Learn how AE is diagnosed through tests and specialists.
Get guidance on healing and managing relapses.
Find out how rehabilitation supports recovery.
IAES helps so much and it is nice to know we are not alone. Thank you all and let’s push forward.
Tracey Anne Jeanette Rudwick
IAES has made dealing with this incredibly difficult and confusing disease bearable. They truly care about each of us and I personally know they will go out of their way tho help if at all possible. There are not enough thank yous for them. There combined knowledge is mind boggling.
Dana Wise Glaze
This is the first-ever Clinical Trial for a promising new drug, Inebilizumab, to treat anti-NMDA receptor encephalitis, and will be funded by the National Institutes of Health (NIH). The trial will start recruitment in January 2022. Enrollment is limited to 116 newly diagnosed patients with a confirmed diagnosis of anti-NMDAR Encephalitis who are 18 years or older.
Join other AE patients and caregivers the last Tuesday of each month to celebrate your critical milestones in recovery and care and help you to build a more resilient network. Host Tessa McKenzie, Life Design Educator for the Social Sciences at John Hopkins, will provide prompts for the reframe of perceived failures as well as peer-to-peer validation of “wins’ and opportunities for relationship building.
The IAES Caregiver Support Group takes place the 2nd Thursday of each month. This is a ‘safe space’ where caregivers can build relationships/friendships with others who are “walking that walk”, share/vent and receive the support and direction they so richly deserve.
IAES has created the first product in the world about Autoimmune Encephalitis for patients, families, therapists, and medical professionals. 52 most common questions are answered for you right in the palm of your hand. It’s a real game-changer in providing the support needed during your difficult journey. Created in collaboration with Dr. Josep Dalmau. All proceeds will go to support his research team’s efforts in a search for a cure.
IAES expresses gratitude to UCB for their sponsorship of this website. UCB is inspired by patients and driven by science.” is the sentiment.
