Join the AE Community
From our start in 2012, the AE Alliance has endeavored to ensure that no one would face autoimmune encephalitis alone. We’re building a future in which information and community are potent weapons. A tomorrow where advanced care leads to a cure, collaboration between families, clinicians, and researchers are models of efficiency and mutual respect. Today, we can tell you that no one needs to face this disease alone.
Online Community
AE Alliance partnered with Smart Patients in September 2018, to create an online community for patients and families affected by autoimmune encephalitis. It’s a great way to connect with others on a similar journey in a safe, welcoming online environment.
It is free to join and easy to sign up by visiting www.smartpatients.com/ae-alliance. We hope you’ll benefit from asking questions and sharing with others affected by autoimmune encephalitis.
Here’s why Smart Patients is different than other online communities:
- No advertisements are ever allowed.
- All conversations are strictly private and can only be read by members.
- Only patients and caregivers are allowed to join.
- Discussions are closely monitored for inappropriate content or users.
- Communities are nationwide.
- Member profile data is never required or shared.
Local Community
The AEA Support Group brings together patients and caregivers to share personal experiences and feelings, coping strategies, and firsthand information about AE and its treatments.
The support group comes together three to four times a year, and meeting others going through similar experiences is very empowering. What makes our support groups unique, is the fact that we have healthcare professionals speak and answer questions at these meetings. This is not only informative for the members, but also for the medical professional, learning more about the patient’s perspective. Our speakers in 2020 included: Dr. Souhel Najjar, Dr. Stacey Clardy, Dr. Anusha Yeshokumar, Dr. Stephen Rush and Dr. Fred Lado. And in February 2020, we officially partnered with Northwell Health to facilitate our Northeast group.
We currently have four geographical support groups
Northeast Support Group
Joe Calcagno – GAD65 survivor
Midwest Support Group
Therese Fledderjohn – Caregiver
South Support Group
Lisa Lauter – LGI1 survivor
West Support Group
Rachael Bikbov – seronegative AE survivor
If you want to start a Support Group in your area, email us at support@aealliance.org