Other Resources for Patients and Caregivers

If you are reading this page, then you or someone you care about has likely been diagnosed with autoimmune encephalitis. You are not alone. We are here to provide hard won wisdom, connections to a community living with this disease and tools to navigate the medical system.

After reviewing the following resources, please contact us if you know of other useful resources for patients and families living with autoimmune encephalitis.

The sheer quantity of research literature can be overwhelming. For this reason, we have provided a selection of about a dozen of the most influential and comprehensive Peer reviewed literature 2008-2018.

Navigating the Medical System

Anyone who has spent time in a hospital, learns unique processes or ways to be efficient. One thing that worked for our family was keeping a binder of all our test results and doctor’s write ups. During the course of diagnosis and treatment, patients (both young and old) with autoimmune encephalitis will interact with doctors from different medical disciplines. In order to stay organized with the many different tests and medical reports, it is important for you to keep your own binder with copies of these reports divided by medical specialty (i.e. Neurology, Psychiatry, Immunology). This can help eliminate duplicate testing and hopefully lead to more efficient care.

Share your “hard won” wisdom navigating the medical system.

Social Media Support Group

Connect with other families and patients as they share their stories and hard won lessons living with Anti-NMDA Receptor Encephalitis, a specific type of autoimmune encephalitis.

NMDA Antibodies Support Group for families and patients.

Autoimmune Encephalitis Specific Sites

The Alliance is building a list of the known types of AE and will add resource links where available. Please connect with us to let us know of additional resources. [NOTE: These are external links. The AE Alliance does not certify the accuracy of information contained on these sites.]

  • Anti-NMDA Autoimmune Encephalitis: The Anti-NMDA Receptor Encephalitis Foundation provides information and support on Anti-NMDA receptor encephalitis. Disease information is translated into English, French and Spanish.
  • Hashimoto’s Encephalopathy: HESA, the Hashimoto’s Encephalopathy SREAT Alliance, provides information and support on HE.
  • Rasmussen’s Encephalitis: The Encephalitis Society provides a fact sheet on Rasmussen’s Encephalitis.
  • Voltage-gated Potassium Channel Encephalitis: The Encephalitis Society (again) provides a good fact sheet.

Autoimmune Disease Groups

The American Autoimmune Related Diseases Association Inc (AARDA) provides information on the more than 100 known autoimmune diseases.

Encephalitis Focused Groups

The Encephalitis Society and Encephalitis Global provide resources to patients and families with a wide range of encephalitis diseases.

Information for Parents of School Age Children

School age children are entitled to accommodations under U.S. law, and may qualify for an Individualized Education Program (IEP) for acquired cognitive problems and/or ADD.  Both the National Center for Learning Disabilities and the National Dissemination Center for Children with Disabilities provide useful information on IEPs and other resources. 

Legal Help for Parents of Special Needs Children

The American Bar Association provides information on free legal services for special populations.

National Disability Rights Network

NDRN is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP). There is a P&A/CAP agency in every state and U.S. territory as well as one serving the Native American population in the four corners region.

STAR Institute for Sensory Processing Disorder

STAR Institute is the premier treatment, research and education center for children and adults with Sensory Processing Disorder (SPD). This includes feeding disorders and other disorders with sensory issues such as autism and ADHD.