Rare Disorders, General
Self Help Clearinghouse
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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. Special interest in loin pain hematuria syndrome.
Hearts and Hands
1648 Oliver's Crossing Circle
Winston-Salem, NC 27127
National Organization for Rare Disorders (NORD)
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.
55 Kenosia Ave.
Danbury, CT 06810
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