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.
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. Meeting others going through similar experiences is very empowering.
Support groups meet typically three times per month via Zoom. While most meetings are an open mic format (informal discussion and sharing), speaker and affinity groups are offered throughout the year. Although our support groups are organized by region (Northeast, South, Midwest & West), you may attend the meeting that best meets your schedule.
The Alliance officially partnered with Northwell Health in February 2020 to facilitate our Northeast group. While support groups are meeting via Zoom, Northwell continues to support the Alliance with guest speakers.
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: