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.
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. audiences, Canadian audiences, Spanish 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.