Resources

For Patient-Carers

Welcome to the Patient-Carer Page of AED’s website. Below you will find links to resources on our website that are of specific interest to eating disorder patients and their caregivers.

Areas of Interest to Patient-Carers

AED Recommended Resources and Services

Non-Profit Organizations with Moderated Support Forums

The organizations listed below host moderated online peer support forums for caregivers and/or patients. This is not intended to be a complete list. Support groups vary in their quality and focus and are not a replacement for on the ground treatment.

Important Documents

Ways to Get Involved

Contact the Patient-Carer Committee (PCC) 

Communicate your concerns. The AED Patient-Carer Committee is made up of patients, carers, and professionals who volunteer their time to advise and help with AED initiatives of particular interest to patients and carers. The PCC serves as a liaison between non-professionals and the AED Advisory Board.

Join the AED

Patients and carers are welcome to join the AED. Representatives of eating disorder advocacy organizations and individuals who want to be involved with eating disorder advocacy and education issues are particularly encouraged to join. Please keep in mind that the AED is a professional organization and membership benefits and content are primarily aimed at professionals in the eating disorder field. Learn more about AED Membership.

Join Another Patient or Caregiver Centered Advocacy Organization

Many non-profit organizations rely on volunteers to run their activities and operations. The list of organizations with support forums (above) is a good place to start.

Attend the International Conference on Eating Disorders (ICED) 

AED offers both member and non-member pricing for their annual conference.  This is a good way to connect and meet other ED advocates, treatment professionals, and researchers.

Stay in touch through Social Media

Visit the AED Facebook Page and follow the AED on Twitter.

Scholarships

View scholarships available to Patient-Carers:

Learn More

Mission Statement

PCC Mission

The full integration of the experience, wisdom, and knowledge of patients and carers results in the highest quality eating disorders research, treatment, education, and prevention, which aligns with the mission of the AED.  The objective of the PCC is to foster this integration throughout AED programs and services.

The PCC’s approach to implementation includes 3 key components:

  1. Collaborative outreach and communication channels with key patient-carer communities world-wide to gain knowledge about regional and universal needs, views, and perspectives.
  2. Clear communication channels within AED committees, programs, and services to foster the ongoing integration of regional and universal patient-carer needs, views, and perspectives.
  3. Ongoing communication/dialogue with AED members who are also members of the patient-carer community to identify their unique needs, views, and perspectives and to facilitate the integration of their experience into the larger AED community. 

The AED has made significant strides over recent years in integrating the experience and perspective of patients and carers, both within its organizational structure and into AED programs and services. One of these important strides included the restructuring of the temporary Patient-Carer Task Force into the standing Patient-Carer Committee (PCC).

The PCC is co-chaired by Judy Krasna and Leah Dean, who are serving as committee chairs through mid-2018.