What is autoimmune encephalitis?
Autoimmune encephalitis (AE) is a group of conditions that involve inflammation of the brain. Inflammation is one of the ways that our immune system protects the body from infection. But in autoimmune encephalitis, the immune system mistakenly attacks healthy brain cells and this leads to neurologic and psychiatric symptoms. People with AE have a wide range of symptoms, and not everyone with AE will have the same symptoms. However, certain symptoms and the pattern of symptoms may lead your doctor to suspect this diagnosis. AE is a rare disease affecting 4,000 people in the US each year. AE is hard to diagnose, because not all people with AE present in the same way, or have the same symptoms. In addition, many other conditions can present with similar symptoms to AE, and some of those conditions are much more common than AE.
The Autoimmune Encephalitis Alliance
Families and patients affected by AE started the Autoimmune Encephalitis Alliance (AE Alliance). They launched the Alliance in December 2012: to change how patients with AE are diagnosed and treated, to support families coping with the disease, and to promote new scientific and clinical research that will lead in time to a cure.
The AE Alliance strives to educate physicians in evidence-based best practices for the diagnosis and treatment of AE. Successful patient care requires a collaborative, interdisciplinary approach.
The AE Alliance endeavors to establish a supportive community of patients, families and caregivers, so that no one faces autoimmune encephalitis alone.
The AE Alliance works to facilitate scientific research into the causes of AE and its treatments, leading to more targeted therapies.
Watch the Race to True Diagnosis and learn more about the challenges faced
by patients, families, and physicians.
Patient support includes the online Smart Patients Community, Support Groups, and individual support. Our education efforts focus on physicians, as well as patients and caregivers. We organize conferences, Grand Rounds, webinars, and patient-focused events to share the latest developments in AE care and research. Our grant program and collaborations focus on research directly impacting patient care, encouraging and enabling researchers to center the focus of their efforts on the patients affected by AE and their families.
Board Of Directors
Medical Advisory Board
The AE Alliance Medical Advisory Board (MAB) brings together internationally renowned experts in AE to allow the Alliance to provide patients, families and medical professionals with trusted, evidence-based information and practices. The goal of the MAB is to ensure the Alliance has access to the most up-to-date information on diagnosis, treatment and outcomes for AE, as well as ongoing research initiatives.