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.
(A Program of the United Spinal Association) National. 44 chapters and 160 support groups nationally. Founded 1948. Provides information and referrals on many topics to persons with spinal cord injuries and diseases, their families and interested professionals. Group development guidelines, monthly newsletter, bi-monthly edition of 'Life in Action'(published in both hard copy and electronic format), support groups and peer counseling. Online listing of local chapters.
National Spinal Cord Injury Association
75-20 Astoria Blvd
East Elmhurst, NY 11370
National. 400 affiliated groups. Founded 1990. Organization dedicated to the life-long concerns of brothers and sisters of people with special health, developmental and mental health concerns. Provides workshops on sibling issues, hosts listservs and provides training on how to implement Sibshops (lively workshops for school-age siblings).
Sibling Support Project
6512 23rd Ave. NW, Suite 213
Seattle, WA 98117
International. 28 chapters. Founded 1994. Provides education regarding the impact of chronic illness and/or disability on a family. Information, referrals, phone support, e-mail correspondence and 'how-to' guides on developing a local group.
18 Dunster Rd.
Great Neck, NY 11021
National. 28 chapters. Founded 1946. Aim is to provide support and improve the quality of life for all Americans with spinal cord injuries and disorders.
United Spinal Association
75-20 Astoria Blvd.
Jackson Heights, NY 11370-1177
Voice: 718-803-3782 ext. 7203
National. 34 chapters and 58 field service offices. Aim is to ensure that spinal cord injured or diseased veterans achieve the highest quality of life possible. Membership is available solely to individuals who are American citizens with spinal cord dysfunction as a result of trauma or disease. Must have served on active duty and had an other than dishonorable discharge. Support groups, publications, VA benefits counseling, magazine, information and referrals.
Paralyzed Veterans of America
801 18th St. NW
Washington, DC 20006
Voice: 1-800-424-8200 or 202-872-1300
Online. Provides a forum for quadriplegics (tetraplegics) to support and communicate with others who share the same condition. Not strictly a SCI (spinal cord injury) forum. Forum is for anyone who suffers a partial or full loss of function of all four extremities of the body.
Website: http://www.makoa.org/quadlist.htm or http://www.facebook.com/quadlist
E-Mail: firstname.lastname@example.org (Jim Lubin)
Online. Founded 1989. A UK-based organization of lesbian, gay, bisexual and transgender (LBGT) people who are disabled. Offers information, suggestions and social contact for members through online groups. Provides advocacy and campaigns on issues affecting disabled LBGT people. Provides online newsletters, news and notices.
London, UK WC1N 3XX
Website: http://www.regard.org.uk or http://facebook.com/#!/group.php?gid=131451632773 and http://uk.groups.yahoo.com/group/regardonline
Online. Founded in 1999. 120+ members. Provides mutual support for individuals with Cauda Equina Syndrome (CES), a neurological condition regarded as a form of spinal cord injury. Site has a chat-room, message board and information on illness.
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
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