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Information and Resources

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Rare Disorders, General

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 or 203-744-0100
Fax: 203-798-2291
TDD: 203-797-9590
Website: http://www.rarediseases.org
E-mail: orphan@rarediseases.org
Verified: 10/4/2011

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
1648 Oliver's Crossing Circle
Winston-Salem, NC 27127
Voice: 336-785-7612
Verified: 10/19/2011

The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.

For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp

If you find information that is not current, please contact American Self-Help Group Clearinghouse at: admin@selfhelpgroups.org

WebMD Medical Reference from the American Self-Help Clearinghouse

Last Updated: May 16, 2012

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.This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.