Living with AE Advisory Council

Established in 2022, the Living With AE Advisory Council is focused on providing timely and effective resources, education, support and programming for all who are impacted by AE.  Our primary goal is to create an ongoing collaborative of patients, caregivers, healthcare professionals and AE advocacy partners that will function as a comprehensive and accessible resource and advocacy base.  The Alliance will look to the collaborative to provide input regarding our most pressing needs so that we can tailor our programming efforts and heighten awareness of AE.  The living with AE advisory council cares about you and the AE community.  We are excited to introduce the current and future committees of the Living with AE Advisory Council.

Living with AE Advisory Council Committees

  • Support Group

    The Support Group committee collaborates with the AE Alliance to ensure the Living with AE community is provided ample opportunities for informal discussion, education, resources and support. There are typically three meetings per month and several types of meetings (Open Mic, Speaker, Affinity).

  • AE to Advocacy

    The AE to Advocacy committee collaborates with the Alliance to create opportunities and provide resources for the AE community to develop their advocacy skills. From diagnosis of AE to treatment and recovery, learning to tell your AE story is a superpower that drives change in personal life and for the greater good. Whether you are a person living with AE, a caregiver, family member, friend, health care professional or AEA partner, we believe everyone has a story to tell and can impact the course of AE.

  • Future ~ Stay Tuned & Visit Often

SUPPORT GROUP LEADERS

Christy
Christy

AEA Community Support Group

Ed
Ed

Partners & AEA Community Support Groups

Ed & Nancy
Ed & Nancy

Partners Support Group

Jacquie
Jacquie

Caregivers Only Support Group

JODI
JODI

Individuals with AE & AEA Community Support Groups

JOE
JOE

AEA Community Support Group

Linda
Linda

Caregivers Only Support Group

LISA
LISA

AEA Community Support Group

RACHAEL
RACHAEL

Parents with AE & AEA Community Support Groups

AE to ADVOCACY LEADERS