An Introduction to Eating Disorders Organizations
There are numerous national organizations devoted to eating disorders education, treatment, and prevention. Short descriptions and links are provided for more than 25 of them at our website, www.edcatalogue.com. All of the ones mentioned in this article are not-for-profit, and most distribute basic information, offer referrals for treatment, host professional conferences, have helpful websites, and are involved with political advocacy. Individuals in recovery and their loved ones may wonder which groups will best meet their needs, and the brief descriptions below should be a good place to start.
Founded in 1976, the National Association of Anorexia Nervosa and Associated Disorders (ANAD) is the oldest non-profit organization devoted to eating disorders. They offer many services, all of which are free.
ANAD has a network of 350 support groups in 18 different countries, where participants can openly express their feelings, share experiences, and gain honest feedback. Many are not professionally-led nor is ongoing attendance required and they are not intended as a substitute for therapy. The groups are voluntary, some are open to family members, and the primary value of attending is gaining insight and support from others in recovery.
Fighting insurance discrimination is one of ANAD’s most important functions. They will discuss insurance issues with individuals, families, and attorneys, and suggest strategies for coping with managed care discrimination. They can assist in helping you to register a complaint with your employer regarding insurance or writing a formal letter of complaint to HMO’s, and they have interacted with State Insurance Commissioners and the media. ANAD also lobbies for state and national health insurance parity.
Other services include a treatment referral list with about 2000 therapists, an interactive “Hopeline” online bulletin board, a hotline (847/831-3438 – Monday thru Friday from 9:00am until 5:00pm, Central time), and various other educational resources and programs.
The National Eating Disorders Association (which prefers not to be abbreviated as NEDA—though we will here for simplicity) is the largest advocacy group. It was created by a merger of several national organizations that recognized the importance of centralizing their efforts. Their combined mission is “To eliminate eating disorders and body dissatisfaction through prevention efforts, education, referral and support services, advocacy, training, and research.”
Their most prominent activity is the sponsorship of Eating Disorders Awareness Week (EDAW), which is celebrated at the end of February in all 50 states and numerous foreign countries. Each year, EDAW programs and events are organized locally by a network of over 600 coordinators, who promote a common, annual theme. Many of these people, who are eating disorders specialists, attend a national conference where they are trained to be effective prevention educators. Typically, events are held at high schools, colleges, and community centers, and come in many formats, including lectures, interactive fairs, performances, and fundraising activities.
NEDA also publishes and distributes educational materials, operates a toll-free information and referral “helpline” (800/931-2237), has a Media Watchdog Program, created a Prevention Puppet Program for elementary schools, and sponsors an awareness-raising campaign about positive body image and healthy eating in major national magazines. Their GO GIRLS!™ curriculum (Giving Our Girls Inspiration and Resources for Lasting Self-Esteem), is designed to help high school girls learn about body image and media literacy.
There are two main groups for professionals, the International Association of Eating Disorders Professionals (IAEDP) and the Academy for Eating Disorders(AED). Both have treatment referrals, high standards for membership, and annual conferences in different cities each year that draw attendees from many countries.
Established in 1985, IAEDP offers a certification for treatment specialists who must meet certain training criteria and pass an exam. The designation of Certified Eating Disorders Specialist (CEDS) or Certified Eating Disorders Associate (CEDA) indicates that the therapist received their certification from IAEDP. Although not all qualified professionals (psychiatrists, psychologists, marriage and family therapists, social workers, nutritionists, etc.) in the field have obtained this certification, having it indicates that the therapist specializes in eating disorders.
The Academy for Eating Disorders was founded in 1993 as an international, multidisciplinary, professional organization with the mission of promoting excellence in research, treatment, and prevention of eating disorders.Their members include most of the field’s best known experts, who all receive the International Journal of Eating Disorders with their membership. They have a forum for discussion on a very active listserve, plus members can join more than a dozen special interest groups in such areas as child and adolescent treatment, medical care, neuroimaging, and nutrition.
The Eating Disorders Coalition for Research, Policy and Action (EDC) is comprised of these and other eating disorders organizations. Their mission is to advance the federal recognition of eating disorders as a public health priority. Centered in Washington, DC, the EDC is focused on raising awareness among policy makers and the public at large. They have been instrumental in introducing legislation in Congress with the objectives of promoting federal support for improved access to care and increasing funding and support for scientific research.
In addition to the organizations listed above, there are several regional associations, some of which have national-level programs. Unfortunately, space limitations here prohibit mentioning them all, but they are included in the comprehensive list at our website. Some of these, such as the Massachusetts Eating Disorders Association, have local support groups, a speaker series, and a referral network. Others were founded by families whose daughters died from eating disorders. The Elisa Project in Dallas, TX has an annual conference and presents educational programs. The Anna Westin Foundation has a residential treatment facility and helps families understand ways to negotiate with insurance companies. There are also groups like Overeaters Anonymous and Eating Disorders Anonymous, which offer local support groups.
Finding Out More
An efficient way to get to know these organizations better is to visit their websites. Many operate with relatively small budgets, and before the Internet, could not afford to dispense a lot of free information. Now, anyone who is interested can get the details they need online. Visitors to their sites can learn about each organization’s mission, leadership, programs, and calendar of events. A great way to complement the recovery process is by getting involved with others who are working to end eating disorders. They can certainly use the help!
Reprinted with permission from Eating Disorders Recovery Today
Summer 2003 Volume 1, Number 5
©2003 Gürze Books
Dr. Gnap website editor eatingdisordersrecoverytoday.com. Dr. Gnap is a family practice physician and behavioral medicine specialist in suburban Chicago. Dr. Gnap developed the Inner Control™ Program in 1970 and has worked with thousands of people to improve and correct medical, emotional, behavioral and learning problems including performance.