National network. Founded 1983. Information and networking for persons with any type of rare disorder. Literature, information and referrals. Advocacy for orphan diseases. Networks persons or families with the same disorder for support. Guidelines available for starting similar groups. Write: NORD 55 Kenosia Ave. PO Box 1968 Danbury, CT 06813-1968 Voice: 1-800-999-6673 or 203-744-0100 Fax: 203-798-2291 TDD: 203-797-9590 Website: http://www.rarediseases.org E-mail: orphan@rarediseases.org Verified: 10/26/2009
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
Online. 226 members. Founded 1999. Support group formed by and for those who have a rare disorder, and their caregivers, families and friends. Researchers, medical professionals and students also welcome. Opportunity to talk about a rare illness, ask for support, find help and meet others with the same disease and/or problem. Website: http://health.groups.yahoo.com/group/Rare-Disorders-Adults Verified: 6/3/2009
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