Undiagnosed Illness
Self Help Clearinghouse
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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