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Rare Disorders, General

Self Help Clearinghouse

This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.

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

Voice: 336-785-7612

Verified: 1/22/2013

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

Voice: 1-800-999-6673

Fax: 203-798-2291

TDD: 203-797-9590



Verified: 1/9/2013

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