Patients and Caregivers

If you or a family member has autoimmune encephalitis (AE), we want you to know you are not alone. AE, once considered rare by the medical community, is more widely diagnosed today — though the exact number of AE cases is unknown.

The good news is that recovery is possible. A 2013 peer-reviewed study by Dr. Titulaer, Dr. Dalmau and colleagues reported that 53% of patients with Anti-NMDA autoimmune encephalitis who received a standard immunomodulation therapy showed improvement within 4 weeks, and 81% of patients eventually achieved substantial or complete recovery.

Even with increased knowledge and awareness of the disease, many patients and their families report delays in diagnosis, a lack of clarity about treatment options and feelings of isolation. It’s the AE Alliance’s mission to change that.

These pages provide up-to-date information on symptomsdiagnosistreatmentrecovery and resources. Whether you or a family member suspects AE or has been diagnosed, we hope you’ll find the information and support you need here and on our blog and Facebook page.

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