Rare Disorders, General
Self Help Clearinghouse
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
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.
P.O. 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: 10/27/2007
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