AE Alliance works closely with healthcare professionals and organizations. Among the services we provide are free patient materials, listing on our Clinicians Network, access to our secure physician’s portal, collaborating on research projects, publishing recruitment information for clinical trials, and providing grants to qualifying projects.
We welcome the support and guidance of healthcare professionals willing to offer their expertise to the AE community. Some ways that healthcare professionals can get involved include: answering questions for the Ask Our Panel segment for our quarterly newsletter, speak at Support Group Meetings and patient conferences, and submitting articles for AEA publications.
The AE Alliance offers an AE Clinicians Network to connect patients with doctors who have experience treating AE and connect practicing clinicians for ongoing collaboration.
The AEA Community Seed Grant Program supports research focused on the diagnosis, management, and outcomes of individuals with AE.
As part of our mission to improve care for patients with AE, the AE Alliance aims to support and educate the community about AE clinical trials and facilitate the research that forms the basis for clinical trials. There are currently nine clinical trials available, eight of them in Europe and one preformed in China. There are no clinical trials in the US as of now.
Graus et al., A clinical approach to diagnosis of autoimmune encephalitis, the Lancet, 2016
Cellucci et al., Clinical approach to the diagnosis of autoimmune encephalitis in the pediatric patient, Neurology, Neuroimmunology & Neuroinflammation, 2020
Lancaster E., The Diagnosis and Treatment of Autoimmune Encephalitis, JCN, 2016
Shin et al., Treatment strategies for autoimmune encephalitis, Therapeutics Advances in Neurological Disorders, 2017
Psychiatrists play a pivotal role in the diagnosis and treatment of AE. As psychiatric symptoms often dominate the symptoms that occur at the onset of this disease, patients may present initially to a psychiatrist. These psychiatrists are tasked with identifying abnormal features of psychosis presentations, including alterations in mental status, seizures, and dysautonomia, which may prompt consideration of AE and consultation with a neurologist.
For patients with suspected AE undergoing immunotherapy, psychiatric symptoms are frequently ongoing and may require symptomatic pharmacologic and non-pharmacologic treatments. AE Alliance has created a guide which includes an overview of scientific articles that are of specific interest to psychiatrists in collaboration with Dr. Anusha Yeshokumar and Dr. Pojen Deng. Click here to view the guide as a pdf. We encourage psychiatrists to join our Clinicians Network, as AE care requires a multidisciplinary approach. We would also welcome the opportunity to work with you in raising awareness amongst psychiatrists for AE. Email us, for more information.
Learn more about the role of a psychiatrist in AE diagnosis and treatment from Dr. Stephen Rush, associate professor of Psychiatry and the Medical Director of Ambulatory Services at the University of Cincinnati Department of Psychiatry and Behavioral Neuroscience.
AE Alliance is open to article submissions for its monthly and quarterly newsletter.
The AEA readership includes AE patients, caregivers, and healthcare professionals from all over the world. It is distributed free of charge to subscribers. The goal of the newsletter is to provide practical information to the AEA community on all topics related to AE, and to keep readers abreast of new developments in AE research and treatment. Topics include:
Articles should be written for the benefit of AE patients, and submitted by email.
Where possible, articles should be organized to include a background discussion of the topic, followed by guidance or solutions, and accompanied by resources. Submissions may also include recent academic publications that are of interest to the AEA readership.
For further information about submission guidelines, contact our staff via e-mail at [email protected]
AE Alliance is proud to provide you with tools and resources to help you in educating patients and their families about their disease. All toolkits, and additional resources are available to complement your medical care.
In the period following the initial diagnosis, many patients and their families do not retain the information they are given about the disease. Patients can take home this guide and review at their convenience. It contains basic information on how to get organized, what to expect and where to get support. Available in pdf and in print.
The AE Recovery Toolkit is created by AE Alliance in strong collaboration with two AE Survivors, Lisa Lauter and Alanna Yee. It contains valuable information for when patients are discharged from the hospital and start with their recovery journey. Not only does this toolkit offer practical information, it also provides your patient with survivor perspectives, ensuring that they know, they are not alone in their recovery journey. Available in pdf and in print.
Published quarterly, the AEA Newsletter presents balanced coverage of: important issues affecting the AE community, inspirational stories from people affected by AE, and information about our programs and services. The AEA Newsletter is delivered free of charge and makes a great addition to waiting rooms. Due to the COVID-19 pandemic, the newsletter is now only available in pdf format.
We offer an online Smart Patients AE Support Community, and local support groups, bringing together patients and caregivers to share personal experiences, coping strategies, and firsthand information about AE and treatments. The Support Cards offer your patients all the information on how to access, and join our support options. Available in pdf and in print.