Self Help Clearinghouse

Undiagnosed Illness

This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.

Syndromes Without A Name (SWAN) USA

National. Founded 2004. Mutual support network and informaiton for parents of children with an undiagnosed or unnamed condition. Newsletter and E-list discussion group for parents to share information and provide each other with support.
Write:
Syndromes Without A Name
1745 Lorna Lane
Otsego, MI 49078
Voice: 269-694-6061
Website: http://www.undiagnosed-usa.org/
E-mail: amyclugston@undiagnosed-usa.org
Verified: 6/11/2007

Hearts and Hands

Model. 1 group in NC. Founded 1993. Emotional, spiritual and educational support for persons with either rare or undiagnosed illnesses and their families. Also has a registry for loin pain hematuria syndrome.
Write:
Hearts and Hands
1648 Oliver's Crossing Circle
c/o Winoka Plummer
Winston-Salem, NC 27127
Voice: 336-785-7612
Website: http://www.geocities.com/hotsprings/spa/2464/index.html
Verified: 11/5/2007

In Need Of Diagnosis, Inc. (INOD)

International. Founded 2006. Provides information and mutual support to those who have an undiagnosed illness. Has an 'E-List' to enable persons in need of diagnosis to communicate, exchange information and provide each other with support. Promotes changes in the healthcare system to facilitate the prompt and accurate diagnosis of medical disorders, especially rare disorders.
Write:
In Need Of Diagnosis, Inc.
P.O. Box 536456
Orlando, FL 32853-6456
Voice: 1-888-894-9190 or 407-894-9190
Fax: 407-898-4234
Website: http://www.inod.org
E-mail: meggenetti@aol.com
Verified: 5/31/2007

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The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.

For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp

If you find information that is not current, please contact American Self-Help Group Clearinghouse at: admin@selfhelpgroups.org

Copyright © 2008 American Self-Help Group Clearinghouse. All rights reserved.

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