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.
Write:
Hearts and Hands, c/o Winoka Plummer
1648 Oliver's Crossing Circle
Winston-Salem, NC 27127
Voice: 336-785-7612
Verified: 8/9/2012

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.
Write:
NORD
55 Kenosia Ave.
Danbury, CT 06810
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: 7/24/2012

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