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.
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: 10/1/2008
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 or 202-467-5081 Fax: 202-467-5085
Website: http://www.acb.org
E-mail: info@acb.org
Verified: 10/1/2008
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 or 1-800-852-3029 Fax: 617-926-1412
Website: http://www.mabcommunity.org
E-mail: fweisse@mabcommunity.org
Verified: 10/14/2008
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 year.
Write: Foundation Fighting Blindness
11435 Cronhill Dr. Owings Mill, MD 21117-2220
Voice: 1-800-683-5555 or 1-800-683-5551 Fax: 410-363-2393
Website: http://www.fightblindness.org
E-mail: info@fightblindness.org
Verified: 10/14/2008
Blinded Veterans Association
National. 53 regional groups. Founded 1945. Support, information
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 or 1-800-669-7079 Fax: 202-371-8258
Website: http://www.bva.org
E-mail: bva@bva.org
Verified: 11/13/2008
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: 10/15/2008
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: 10/14/2008
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: NAPCVI
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: 10/14/2008
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, Ste. 1004 Washington, DC 20005
Voice: 1-800-733-2258
Website: http://www.cclvi.org
Verified: 10/1/2008
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: Nat'l Organization of Parents of Blind Children
1800 Johnson Street c/o Barbara Cheadle Baltimore, MD 21230
Voice: 410-659-9314 ext.2360 Fax: 410-685-5653
Website: http://www.nfb.org/nopbc
E-mail: bcheadle@nfb.org
Verified: 10/14/2008
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: Nat'l Assn of Visually Handicapped
22 West 21 St., 6th Fl. c/o C. Gomez New York, NY 10010
Voice: 212-889-3141 or 1-888-205-5951 Fax: 212-727-2931
Website: http://www.navh.org
E-mail: navh@navh.org
Verified: 10/14/2008
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 or 212-821-9200 Fax: 212-821-9707 TDD: 212-821-9713
Website: http://www.lighthouse.org
E-mail: info@lighthouse.org
Verified: 10/14/2008
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: 9/25/2008
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: 10/14/2008
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 Fnd. / Hamilton Eye Inst.
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: 10/13/2008
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: 10/20/2008
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: 9/25/2008
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: 9/25/2008
Jewish Guild for the Blind, The
National. Founded 1914. Support for persons of all ages who are
visually impaired, blind and those with additional disablities.
Telephone support network brings together parents from around the
country whose children have the same condition (retinopathy of
prematurity, retinitis pigmentosa, cortical visual impairment,
Leber's congenital amaurosis and Stargardt disease) to speak with
parents in the same situation. Newsletter, literature and how-to
materials for starting a support group available on the website or
in hard copy.
Write: The Jewish Guild for the Blind
15 West 65th Street New York, NY 10023
Voice: 1-800-284-4422 or 212-769-7800
Website: http://www.jgb.org
E-mail: info@jgb.org
Verified: 8/19/2008
VitreousFloaters
Online. 2703 members. Founded 2000. Support for those with eye
floaters or vitreous detachment. Opportunity to share experiences,
ideas for treatment and strategies for living with floaters.
Website: http://health.groups.yahoo.com/group/vitreousfloaters/
Verified: 8/21/2008
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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