Self Help Clearinghouse
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Association for Macular Diseases, Inc.
National. Local support groups. Founded 1978. Support for persons suffering from macular diseases and their families. Distributes information on vision equipment. Supports national eye bank donor projects devoted solely to macular disease research. Quarterly newsletter, phone support network, participates in seminars and group development guidelines. Dues $20/year.
Write:
Association for Macular Diseases
210 E. 64th St.
New York, NY 10021
Voice: 212-605-3719
Fax: 212-605-3795
Website: http://www.macula.org
Verified: 12/20/2007
American Council of the Blind
National. 70 affiliates. Founded 1961. Aims to improve the well-being of all blind or visually impaired people and their families through education, support and advocacy. National conference, information and referrals, phone support, state and special interest affiliates (e.g. guide dog users, blind lawyers, teachers and students) and magazine published ten times per year (available in Braille, half speed cassette, large print, CD-ROM and online or via e-mail). Scholarships. Online job bank. Chapter development guidelines.
Write:
American Council of the Blind
1155 15th Street NW, Suite 1004
Washington, DC 20005
Voice: 1-800-424-8666
Fax: 202-467-5085
Website: http://www.acb.org
E-mail: info@acb.org
Verified: 12/20/2007
MAB Community Services
National. 34 groups. Founded 1903. Support network for persons coping with sight loss. Sponsors support groups for elders and mixed ages. Outreach services, community volunteers, recording studio, cassettes and newsletter.
Write:
MAB Community Services
313 Pleasant St.
Watertown, MA 02472
Voice: 617-926-4232
Fax: 617-926-1412
Website: http://www.mabcommunity.org
E-mail: fweisse@mabcommunity.org
Verified: 10/11/2007
The Foundation Fighting Blindness, Inc.
National. Founded 1971. Offers information and referral services for affected individuals and their families, as well as doctors and eye care professionals. Provides comprehensive information kits on retinitis pigmentosa, macular degeneration and Usher syndrome. Newsletter presents articles on coping, research updates and Foundation news. Supports research into the causes, treatments, preventive methods and cures for the entire spectrum of retinal degenerative diseases. Newsletter 'InFocus' published 3 times/yr. E-newsletter 'InSight' published 5 times/yr. National conference held every other year.
Write:
Foundation Fighting Blindness
11435 Cronhill Dr.
Owings Mill, MD 21117-2220
Voice: 1-800-683-5555
Fax: 410-363-2393
Website: http://www.fightblindness.org
E-mail: info@fightblindness.org
Verified: 12/20/2007
Blinded Veterans Association
National. 53 regional groups. Founded 1945. Information, support and outreach to blinded veterans including those who were blinded in combat and those suffering from age-related macular degeneration and other eye diseases. Help in obtaining prosthetic devices and accessing the latest technological advances to assist the blind. Information on benefits and rehabilitation programs. Quarterly newsletter. Regional meetings.
Write:
Blinded Veterans Association
477 H Street, NW
Washington, DC 20001
Voice: 202-371-8880
Fax: 202-371-8258
Website: http://www.bva.org
E-mail: bva@bva.org
Verified: 10/12/2007
Vision Northwest
Model. 42 groups (support groups in WA and OR). Founded 1983. Mission is to promote independent living for people affected by vision loss through individual and group support, low vision aids, information and education. Helps people with vision loss to become more independent through a network of peer support groups and individual peer counseling. Information and referral, newsletters, low vision accessory store and loan-lending optical aids network.
Write:
Vision Northwest
9225 SW Hall Blvd., Suite G
Tigard, OR 97223
Voice: 503-684-8389
Fax: 503-684-9359
Website: http://www.visionnw.com
E-mail: info@visionnw.com
Verified: 9/18/2007
National Federation of the Blind
National. 52 affiliates. Founded 1940. Serves as both an advocacy and a public information vehicle. Contacts newly blind persons to help with adjustment. Provides information on services and applicable laws. Student scholarships. Assists blind persons who are victims of discrimination. Literature, monthly meetings and magazine. Assistance in starting new groups.
Write:
National Federation of Blind
1800 Johnson St.
Baltimore, MD 21230-4998
Voice: 410-659-9314
Fax: 410-685-5653
Website: http://www.nfb.org
E-mail: nfb@nfb.org
Verified: 5/5/2008
National Association for Parents of Children with Visual Impairments
(BILINGUAL) National. 21 groups. Founded 1980. Outreach and support for parents of children with visual impairments. Promotes formation of local parent support groups. Increases public awareness. Quarterly newsletter. Dues $25/family. Group development guidelines.
Write:
National Association for Parents of Children with Visual Impairments
P.O. Box 317
Watertown, MA 02471
Voice: 1-800-562-6265
Fax: 617-972-7444
Website: http://www.napvi.org
E-mail: napvi@perkins.org
Verified: 10/11/2007
Council of Citizens with Low Vision International
International. Founded 1979. Encourages low vision people to make full use of vision through use of equipment, technology and services. Education and advocacy. Quarterly magazine, information and referrals, group development guidelines, scholarships and conferences.
Write:
Council of Citizens with Low Vision International
1155 15th St. NW, Suite 1004
Washington, DC 20005
Voice: 1-800-733-2258
Website: http://www.cclvi.org
Verified: 9/28/2007
National Organization of Parents of Blind Children
National. 25 chapters. Founded 1983. Serves as both an advocacy and public information vehicle. Provides information on services available. Offers positive philosophy and insights into blindness and practical guidance in raising a blind child. 'Future Reflections' magazine, parent seminars, free parents' information packet, meetings and conventions. Dues $8.
Write:
National Organization of Parents of Blind Children
1800 Johnson Street
Baltimore, MD 21230
Voice: 410-659-9314
Fax: 410-685-5653
Website: http://www.nfb.org
E-mail: bcheadle@nfb.org
Verified: 10/11/2007
National Association for Visually Handicapped
(MULTILINGUAL) National. Founded 1954. Support for visually impaired adults and seniors. Newsletter, phone support, information and referrals. Bimonthly support group for visually impaired seniors. Guide to starting groups for elders losing sight. Free large print loan library by mail and optical library. Large print informational materials available in English, some in Russian, Spanish and Chinese.
Write:
National Association of Visually Handicapped
22 West 21 St., 6th Fl.
New York, NY 10010
Voice: 212-889-3141
Fax: 212-727-2931
Website: http://www.navh.org
E-mail: navh@navh.org
Verified: 5/5/2008
Lighthouse International
Resource. Mission is to overcome vision impairment for people of all ages through rehabilitation services, education, research and advocacy. Free literature on eye diseases (macular degeneration, glaucoma, cataracts, diabetes and more) and various resource lists (reading options, adaptive computer technology, financial aid, etc.) Provides contact information for support groups, low vision services, rehabilitation agencies, state agencies and advocacy groups.
Write:
Lighthouse International
111 E. 59th St.
New York, NY 10022
Voice: 1-800-829-0500
Fax: 212-821-9707
TDD: 212-821-9713
Website: http://www.lighthouse.org
E-mail: info@lighthouse.org
Verified: 11/20/2007
Leber's Congenital Amaurosis eGroup
Online. 568 members. Founded 1999. Provides a listserv for persons who are interested in sharing, support and information relating to the genetic disorder.
Website: http://groups.yahoo.com/group/LCA
Verified: 12/11/2007
National Keratoconus Foundation
National network. Founded 1986. Provides information and support to persons with keratoconus, an eye condition where the cornea progressively thins causing a cone-like bulge. Newsletter, phone support, information and referrals. Online support group. Encourages research into cause and treatment.
Write:
National Keratoconus Foundation
8733 Beverly Blvd., Suite 201
Los Angeles, CA 90048
Voice: 1-800-521-2524
Fax: 310-623-1837
Website: http://www.nkcf.org
E-mail: info@nkcf.org
Verified: 9/18/2007
Aniridia Foundation International
International. Founded 2002. Offers support, data studies, research and education to the public, medical community and members. Provides information, referrals, literature, newsletter, phone support, pen pals and conferences. Online e-mail support and chatrooms. Also supports those with low vision or blindness who experience the same associated conditions such as glaucoma, corneal disease and cataracts. OPTIC program helps those with Stevens-Johnson syndrome, chemical and thermal burns to the eyes and other corneal dystrophy patients.
Write:
Aniridia Foundation / Hamilton Eye Institute
930 Madison Ave., Suite 314
Memphis, TN 38163
Voice: 901-448-2380
Fax: 901-448-2382
Website: http:www.aniridia.net
E-mail: info@aniridia.net
Verified: 5/1/2008
Duane's Retraction Syndrome
Online. 1150 members. Founded 1999. A place for those affected by Duane's retraction syndrome (an eye mobility disorder) to share experiences and information with others.
Website: http://health.groups.yahoo.com/group/duanes
Verified: 9/27/2007
EyesApart
Online. 581 members. Founded 2006. Support forum for adults, teens and parents of children with strabismus (also known as: squint, crossed eyes, lazy eye, wall eyes, double vision, turned, floating, wandering, wayward, drifting eyes) to discuss knowledge, experiences, problems and ideas related to strabismus.
Website: http://health.groups.yahoo.com/group/EyesApart
Verified: 5/6/2008
LazyEye
Online. 927 members. Founded 1999. Provides emotional support and direction to resources for parents of children with amblyopia, strabismus or other conditions associated with 'lazy eye.' Adult amblyopes are welcome as well.
Website: http://health.groups.yahoo.com/group/lazyeye
Verified: 5/6/2008
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
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