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Tips for the Undiagnosed

As of September of 2015, the National Institutes of Health (NIH) has opened a patient portal for those with undiagnosed disease. This new initiative seeks to help those whose conditions have been missed, even by highly skilled physicians and specialists, or who have gone undiagnosed despite thorough clinical investigations.

To read more about this new NIH initiative and how you can apply, this article provides some valuable information and links to the NIH Undiagnosed Diseases Network (UDN).

While HE/SREAT is not considered a genetic disease, the NIH and GARD provide tips and videos on navigating rare conditions. The following video addresses those who have not been able to get a diagnosis. You can find more information on the resources mentioned in the video by visiting the NIH website at

Genetic counselors from the Genetic and Rare Diseases Information Center provide tips for patients without a diagnosis.



HESA is unable to provide visitors medical advise or suggestions on treatments. We are unable to review your personal medical records, or give medical advices. We are supported by volunteers who are not physicians. However, we do offer a variety of resources and information to help individuals, their families, friends, and caregivers make more informed choices about HE/SREAT.

For those who suspect they may have HE/SREAT, please consult a qualified neurologist as part of your diagnostic and care team. For some resources on how to find a qualified neurologist, please visit our page “How to find a specialist“.





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AE Alliance
"The Autoimmune Encephalitis Alliance promotes collaboration to improve care, find a cure and create community so that no one faces autoimmune encephalitis alone.

The Encephalitis Society
"The Encephalitis Society is an International organization providing information and support for all causes of Encephalitis."

Encephalitis Global
"Encephalitis Global is a U.S.A. 501(c)(3) non-profit organization formed in 2005 as an alliance connecting encephalitis survivors and caregivers around the world."

Scientific literature is growing at a rate of more than 2 new articles every single minute. It is impossible for scientists to consume and understand the rapidly expanding ocean of biomedical literature. You can help biomedical researchers find the information they need to discover cures faster.
"Connecting Rare Disease Patients Globally"
"Alone we are rare. Together we are strong.®"

Contact a Family
"For families with disabled children."

Madison's Foundation Provides information about rare diseases and connects parents whose children have the same rare disease.

NIH Health Hotline
Toll-free numbers from the National Library of Medicine's Health Hotlines Database.

HE Notebook - Wordpress Site
A great blog of an HE patient with a trove of information, personal stories, and links to medical studies.