Rare Disorders, General

National Organization for Rare Disorders

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
Fax: 203-798-2291
TDD: 203-797-9590
Website: http://www.rarediseases.org
E-mail: orphan@rarediseases.org
Verified: 9/29/2008

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
Winston-Salem, NC 27127
Voice: 336-785-7612
Website: http://www.geocities.com/hotsprings/spa/2464/index.html
Verified: 10/13/2008

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