I've compiled a list of helpful links, especially for those suffering from autoimmune diseases. Please email me if there are sites, groups, articles, or anything else that should be included.

Anti-NMDA-Receptor Autoimmune Encephalitis

Please check out the Autoimmune Encephalitis Alliance, a new non-profit devoted to spreading the word about AE, connecting doctors and patients, and pushing new research initiatives.

SUPPORT GROUPS

These Facebook groups, devoted to bringing together people suffering from anti-NMDA-receptor autoimmune encephalitis, are the first places I tell people to visit once they’ve been diagnosed: U.S. audiencesCanadian audiencesSpanish speakers, and German speakers.

The first foundation dedicated to spreading the word about anti-NMDA-receptor autoimmune encephalitis and raising funds was recently started (in Nov. 2012) by Nesrin Shaheen in Canada. Here is a link to the Facebook Page.

ARTICLES / VIDEOS

To learn more about anti-NMDA-receptor encephalitis, please check out the seminal paper by Dr. Josep Dalmau (who discovered the disease). Download the PDF >

Watch this terrific program out of Canada about children dealing with anti-NMDA-receptor autoimmune encephalitis. Watch video >

Great overview of the illness done by a Radio National in Australia. Watch video >

Men suffer from this illness, too. Read article >

Kiera Givens Echols is featured on the Discovery Channel’s program “Monsters Inside Me,” about ovarian teratomas. Watch video >

Informative and inspiring story out of Columbia University following Annalisa Meyer’s incredible recovery. Read article >

Many people have reached out to me about adding a link for parents who have children with PANDAS or PANS, a disease though still not proven to be autoimmune-related, but has tremendous overlap with anti-NMDA-receptor autoimmune encephalitis. A great support group is the PANDAS Network that you can access HERE.


Help With Encephalitis

There are also sites devoted to people with encephalitis, caused by all kinds of diseases ranging from autoimmune diseases to West Nile virus infections: The Encephalitis Society and Encephalitis Global.


Autoimmune Diseases

Check out the American Autoimmune Related Diseases Association Inc for information on the 100-plus known autoimmune diseases. Learn more >

Reach out to others on the Autoimmunity Community message board. Learn more >



Twitter Facebook You Tube You Tube