Living with AE Advisory Council

Established in 2022, the Living With AE Advisory Council is the community heart of the AE Alliance. Composed of patients, caregivers, and community members who have lived the AE journey firsthand, the Council ensures that the voices of those most impacted by AE are at the center of our work — guiding our programming, resources, and priorities. From leading support groups to building education resources to developing new ways for the AE community to connect and heal, Council members are active builders of the AE Alliance’s mission.

We are growing deliberately and with intention.

If you are a patient, caregiver, family member, or friend of the AE community and want to turn your experience into something meaningful for others, we welcome you.

Through four subcommittees, the Council brings that belief to life.

Living with AE Advisory Council Committees

AE to Support Leaders

Experienced support group leaders who create connection and community for patients and caregivers navigating life with AE.
AE to Educators

Volunteers developing accessible, meaningful education and support resources for the AE community.
AE to Bridge Builders

Volunteers building the AE Storytelling Library, a growing resource where lived experience becomes a source of learning, connection, and hope for patients, caregivers, clinicians, and researchers alike.
AE to Advocates

Currently forming. Community members turning their AE experience into action, raising awareness and advancing the needs of the AE community.