Today, we’re thrilled to release the official report from the First Annual International Symposium on Autoimmune Encephalitis held March 27-28, 2014 in Durham, N.C. The symposium was funded with the proceeds from the 2014 Florence Forth Road Race!
The primary goal of the symposium was to establish a collaborative medical community to develop a consensus definition and diagnostic criteria for AE. The big take-away from the discussions: doctors are not satisfied with the status quo. They noted the lack of clarity on how to treat and manage AE, citing the lack of consensus in treatment protocols, difficulty coordinating multi-specialty care and obtaining insurance approvals. It was amazing to hear the doctors relating the same challenges that families and patients also face. We are truly in this together.
Symposium attendees traveled from across the United States and England, Canada, Australia and the Netherlands to take part. In all, twenty-four doctors and scientists, who care for patients with Autoimmune Encephalitis (AE), participated, as did representatives from the U.S. National Institute of Mental Health, the U.K.-based Encephalitis Society and the board of the AE Alliance.
During the trip to Durham for the Symposium, many attendees gave informative presentations at Duke Medical Center. The presentation videos are available on the AE Alliance website.
Symposium participants continue to work together to prepare a consensus manuscript for publication outlining a shared definition and diagnostic criteria for AE. Expect more news on this effort later this fall and winter. In addition, we anticipate hosting another International Symposium on AE in 2015.
Our hope and goal is that the Symposium leads to expanded access to quality medical care for all AE patients. The report is available in several formats including PDF, Fixed Layout Epub (For iBook on Mac or iPad), ePub, and Mobi (For Kindle). We hope you’ll read it and let us know what you think.
A final note: The Florence Forth road race made this possible. AE families and patients are invited to gather again in Durham, NC on March 7, 2015 for the next Florence Forth and accompanying AE family lunch. Stay tuned to Florence Forth and facebook for details.