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 major challenge faced by many diagnosed and undiagnosed individuals. Even with a diagnosis of HE/SREAT, some patients find that the diagnosing clinician is unable to provide treatment and/or management of their condition. This sometimes necessitates finding a specialist who is more familiar with the treatment of HE/SREAT.

Clinics

Many HE/SREAT patients have received a diagnosis after visiting clinics that specialize in treating rare or difficult to diagnose conditions like HE/SREAT, such as:

  • Mayo Clinic (US)
  • Northwestern University Medical Center (US)
  • Cleveland Clinic (US)
  • University of Pennsylvania Center for Autoimmune Neurology (US)
  • Johns Hopkins Medical Center (US)
  • Massachusetts General Hospital (US)
  • Duke University (US)
  • UCSF Multiple Sclerosis and Neuroinflammation Center (US)
  • Neurosciences Department of the Froedtert Hospital/Medical College of Wisconsin (US)
  • UT Southwestern and Children’s Health Dallas (US)
  • Neuro-Immunology Clinic at South Health Campus (Alberta, Canada)
  • Oxford University (UK)
  • Odense University Hospital (Denmark)
  • University of Regensburg Hospital/Department of Neurology (Germany)
  • Westmead Hospital (Australia)

We cannot guarantee that by making an appointment at any of these clinics you will be accepted as a patient or given a diagnosis.  Moreover, anecdotal accounts suggest that not all of these institutions are as helpful or responsive as patients would like.  Accordingly, we provide this information as a starting point.

Connecting with Organizations

There are several large organisations that provide resources for patients trying to find a clinician familiar with autoimmune diseases that impact the brain and central nervous system.  A particularly comprehensive listing of such clinics and clinicians around the world has been compiled by the Autoimmune Encephalitis Alliance.  See: AE Clinician Network.

Please understand that clinicians on the AE Alliance 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 familiar with the diagnosis and treatment of HE/SREAT.

The AE Alliance offers this disclaimer on its 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 undiagnosed patients find that connecting with others receiving treatment for HE/SREAT leads to successful patient-to-patient referrals to an experienced physician. It is important, as above, to exercise caution when making or accepting a patient-to-patient referral since an individual cannot guarantee an appointment or the clinicians’ capacity for taking new patients. Moreover, as with any physician, you may have an excellent experience with a neurologist but someone you refer to that same clinician may not.
 

Additional Tips and Information

The National Institutes of Health (“NIH”) offers general tips for how to find a specialist in rare diseases. To learn more about finding a specialist, 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.