Self Help Clearinghouse
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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: 4/30/2008
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
% Winoka Plummer
Winston-Salem, NC 27127
Voice: 336-785-7612
Website: http://www.geocities.com/hotsprings/spa/2464/index.html
Verified: 11/5/2007
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: 1-888-880-7926 or 269-694-6061
Website: http://www.undiagnosed-usa.org
E-mail: amyclugston@undiagnosed-usa.org
Verified: 5/8/2008
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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