Understanding Hashimoto's Encephalopathy 2016 Edition:
An Expanded and Updated Guide For Patients, Families, and Caregivers
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Finding a Neurologist

Finding a neurologist familiar with HE/SREAT is a challenge faced by many diagnosed and un-diagnosed individuals. Even with a diagnosis of HE/SREAT, some patients find that the diagnosing clinician may not be able to proceed with treatment and/or management of their condition. This sometimes necessitates finding a specialist who is familiar with the diagnosis and treatment of HE/SREAT.

Clinics

Many HE/SREAT patients have received a diagnosis from visiting clinics that specialist in treating rare or difficult to diagnose conditions, like HE/SREAT. While we cannot guarantee that by arranging an appointment at any of the below clinics you will be accepted as a patient or given a diagnosis, we provide their information as a starting point in your search for a neurologist and/or medical team which may be able to assist you or your loved one with diagnosis, treatment, and management of your condition.

Mayo Clinic

The Mayo Clinic has several neurologists who have published studies and case reports on patients with autoimmune encephalopathy and HE/SREAT. Many studies that you may come across on HE/SREAT have been published by Mayo Clinic.

The Mayo Clinic has locations in the United States. To arrange an appointment, you can contact them via their website at http://www.mayoclinic.org/.

Connecting with Organizations

There are several large organisations who provide resources for patients on finding a qualified clinician. One, a fellow non-profit organization, Autoimmune Encephalitis Alliance, provides a service called “AE Clinician Network“.  While the “AE Clinician Network” may be able to connect patients with HE/AE with many experienced clinicians, HE/SREAT is still a poorly understood and potentially under-diagnosed condition. Please understand that clinicians on their list in your local area may not be specifically familiar with HE/SREAT as these clinicians treat a variety of diseases associated with encephalitis and encephalopathy. Many patients find they must travel outside their local area to access a neurologist qualified in the diagnosis and treatment of HE/SREAT. The best way to verify if seeing a clinician from the “AE Clinician Network” list is right for you is to research those you wish to see to help you assess if they will be able to meet your personal healthcare needs. The AE Alliance offers this disclaimer on their website.

DISCLAIMER: The AE Alliance has verified each clinician’s willingness to be listed here. The AE Alliance can not certify the accuracy of all information provided. Patients and families are responsible for determining the best clinical option for their needs and are encouraged to consult multiple sources in deciding on a medical team.

Patient-to-Patient Referrals

Many diagnosed and un-diagnosed patients find that connecting with others who have HE/SREAT can sometimes lead to successful patient-to-patient referrals. It is important, as above, to exercise caution when making or accepting a patient-to-patient referral as it is difficult for any individual to guarantee an appointment or the clinicians’ capacity for taking new patients. Like any physician, you may have an excellent experience with a neurologist, however, someone you refer to the same clinician may not. Please do any necessary research before acting on a patient-to-patient referral to help you decide if the referral is appropriate to your situation or condition. 

Additional Tips and Information

While HE/SREAT is not classified as a genetic condition at this time,  the NIH offers general tips and information on how to find a specialist in rare disease that applies to HE/SREAT as well as many other rare conditions. To find more information about finding a specialist in rare diseases, such as HE/SREAT, a set of tips and information can be found at https://rarediseases.info.nih.gov/gard/8570/hashimotos-encephalitis/resources/3.  

           
 

Last edited by Web Team on June 20th, 2016

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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."


Mark2Cure
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.


RareConnect.org
"Connecting Rare Disease Patients Globally"


RareDisesases.org
"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.