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 Winston-Salem, NC 27127 Voice: 336-785-7612 Verified: 10/13/2008
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 407-405-6363 Fax: 407-898-4234 Website: http://www.inod.org E-mail: meggenetti@aol.com Verified: 10/26/2009
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: 10/26/2009
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