The AE Alliance connects people and resources to find a cure for AE. Specifically, the AE Alliance seeks to improve the lives of AE patients and their families by:
- Establishing clinical standards of care across medical disciplines;
- Coordinating basic and clinical research efforts, and
- Building community awareness and connecting families so nobody faces autoimmune encephalitis alone.
2014 Funds Connected Clinicians and Families
Last year, the AE Alliance used Florence Forth funds to host the first International Symposium on Autoimmune Encephalitis. The symposium attracted 24 international experts to Durham, NC for two-days of community building and medical discussions. The doctors and researchers continue to work towards a consensus statement on the definition and diagnostic criteria for autoimmune encephalitis. A 12-page report outlines the discussion and outcomes of the symposium.
The Alliance has also created the first AE Clinicians Network allowing patients and families to locate clinical experts in the U.S. and around the world. The Network was officially launched in early November 2014 and is quickly adding more clinicians.
Much More To Do
In 2015, the AE Alliance plans to achieve the following goals:
- Expand medical education and outreach efforts to reach more than 1000 doctors, increasing their understanding of diagnosis, treatment and care of AE;
- Publish a consensus AE definition and diagnostic criteria in a peer reviewed journal;
- Organize and host the second International Symposium on Autoimmune Encephalitis focused on treatment options for AE patients;
- Develop a multi-discipline, multi-institutional research agenda and initiate an AE research fund; and
- Increase awareness of autoimmune encephalitis among the general public.
Together we can realize the vision to provide a cure for AE that is available to all. Please help spread the word. Consider registering for Florence Forth and starting a team. Thank you for your support.
The AE Alliance is a 501c3 organization. All donations made to Teams are tax-deductible to the maximum extent allowed by law.