Support Options
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.
Support Groups via Zoom
The AE Alliance offers both AEA Community Support Groups and Audience Specific Support Groups.
AEA Community Support Groups
If you are new to AE or support groups the AEA Community Support Groups are a great place to begin. AEA Community Support Groups provide an opportunity for patients, caregivers, family members and friends who are affected by AE to share experiences and ask questions. Topics vary from meeting-to-meeting based on the individual participants and their personal needs.Community Support Group meetings include: AEA announcements, brief introductions and group discussion. Each month, we offer a weeknight and a Saturday AEA Community Support Group.
Meeting others going through similar experiences is very empowering.
NOTE: Each Community Support Group has its own personality based on the different leads. Each meeting varies based on the participants. Try several meetings and find those that best meet your needs and schedule.
Audience Specific Support Groups
Each of the Audience Specific Support Groups began as a result of discussions during the AEA Community Support Groups. The groups include: Caregiver Only, Individuals with AE, Partners with AE and Parents with AE. These groups allow participants to share more completely and openly the personal experiences and challenges unique to the specific group. To view the group specific descriptions, click the name of the group.
Please note: All AE Alliance support groups are peer-led and do not provide medical advice. Our support groups offer an opportunity for patients and caregivers to share personal experiences and feelings, coping strategies, and firsthand information about AE. Each person’s situation is unique and we do not suggest that there is a single, standard way of navigating the illness. All attendees respect and value the privacy of every participant and agree not to share or disseminate any personal information of other AE Alliance support group attendees.
See The Support Group Schedule
Smart Patients 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.
If you want to start a Support Group in your area, email us at support@aealliance.org