General Information and Associations
American Academy of Ophthalmology
P.O. Box 7424
San Francisco, CA 94120-7424
(415) 561-8500
http://www.aao.org
Represents board-certified ophthalmologists in the United States. Offers public information materials and clinical education programs in a variety of formats. Coordinates the National Eye Care Project, a program to provide free or low-cost eye exams for people over age 65 (1-800-222-EYES).
AMD Alliance International
1929 Bayview Avenue
Toronto, Ontario
M4G 3E8
(416) 480-7505
http://www.amdalliance.org/
The AMD Alliance International, a nonprofit coalition of the world's leading vision and seniors' organizations, is currently represented in 21 countries.
American Council of the Blind
1155 15th Street, NW, Suite 1004
Washington, DC 20005
1-800-424-8666
(202) 467-5081
info@acb.org
http://www.acb.org
Serves as a national clearinghouse on blindness issues for individuals, organizations, and institutions. Provides an information and referral service on Federal legislation, administrative action, and rule making on national and state levels. Offers group insurance plans, coordinates class action litigation, and educates the public about blindness and the abilities of visually impaired people.
American Foundation for the Blind
11 Penn Plaza, Suite 300
New York, NY 10001
1-800-232-5463
(212) 502-7600
afbinfo@afb.net
http://www.afb.org
Provides consultation to schools, agencies, and organizations. Gives technical assistance through the staff at regional service centers. Records and manufactures talking books. Publishes books, pamphlets, and periodicals. Adapts and evaluates devices to help blind and visually impaired people live and work independently. Conducts social research on visual impairment and blindness.
American Optometric Association
243 Lindbergh Boulevard
St. Louis, MO 63141
(314) 991-4100
AmOptNEWS@aol.com
http://www.aoanet.org
Provides brochures on low vision and other eye problems.
Association for Education and Rehabilitation of the Blind and Visually Impaired
1703 North Beauregard St.
Suite 440
Alexandria, VA 22311
(877) 492-2708
http://www.aerbvi.org
Includes educators, rehabilitators, administrators, parents, and houseparents of blind children; agencies, schools, and others interested in the education, guidance, vocational rehabilitation, or occupational placement of the blind and partially-sighted. Cooperates with colleges and universities in conferences and workshops. Presents awards, conducts certification programs, and maintains job exchange services and a speakers' bureau.
Council of Citizens with Low Vision International
1859 North Washington Ave.
Suite 2000
Clearwater, FL 33755
1-800-733-2258
http://www.cclvi.org
Serves as an advocacy group for the visually impaired. Provides information on low vision technology. Offers scholarship. Publishes the CCLV News.
Lighthouse International
111 E. 59th Street
New York, NY 10022
1-800-829-0500
(212) 821-9200
(212) 821-9713 (TDD)
info@lighthouse.org
http://www.lighthouse.org
Serves as a national clearinghouse for information on vision impairment across the life span and services available nationwide. Offers a comprehensive selection of education products, large print materials, talking products, and related specialty items for people with visual impairments. Adaptive devices are available through catalog sales.
Lions Clubs International
300 22nd Street
Oak Brook, IL 60523-8842
(630) 571-5466
lions@lionsclubs.org
http://www.lionsclubs.org
Provides financial assistance for eye care to individuals through local clubs. Coordinates sight conservation activities. (Note: There are Lions Clubs in most localities, and services vary from club to club. Check your telephone book for the address and telephone number of your local club.)
National Association for Parents of Children With Visual Impairments, Inc.
P.O. Box 317
Watertown, MA 02471
1-800-562-6265
napvi@perkins.org
http://www.spedex.com/napvi/
Offers emotional support for parents of blind or visually impaired children. Provides information, training, and assistance, and help in understanding and using available resources. Publishes Awareness, a quarterly newsletter.
National Association for Visually Handicapped
22 W. 21st Street, 6th Floor
New York, NY 10010
(212) 255-2804
http://www.navh.org
Serves as a clearinghouse for information about all services available to the partially-sighted from public and private sources. Conducts self-help groups. Provides information on large print books, textbooks, and educational tools.
National Federation of the Blind
1800 Johnson Street
Baltimore, MD 21230
(410) 659-9314
http://www.nfb.org
Represents the largest membership of blind people in the nation. Provides a wide variety of services to visually impaired people including job placement. Publishes the Braille Monitor and Future Reflections. Distributes a catalog of publications available in large print, Braille, or audiocassette, and a catalog of aids and appliances.
Prevent Blindness America
500 E. Remington Road
Schaumburg, IL 60173
1-800-331-2020
info@preventblindness.org
http://www.preventblindness.org
Produces educational materials that address the special needs of senior citizens, agriculture and industrial workers, school teachers and children, nurses, and doctors. Offers guidance regarding current available treatments, eye care facilities and programs, and current eye research findings through the National Center for Sight. Administers a research program to provide small start-up grants to young scientists.
Research to Prevent Blindness, Inc.
645 Madison Avenue, Floor 21
New York, NY 10022-1010
1-800-621-0026
(212) 752-4333
http://www.rpbusa.org/index.htm
Provides research grants to scientists interested in eye disease and vision disorders. Conducts seminars to encourage communication among scientists, practicing ophthalmologists, and the public.
Resources for Rehabilitation
22 Bonad Road
Winchester, MA 01890
(781) 368-9094
info@rfr.org
http://www.rfr.org
Provides training and information to professionals who serve individuals with vision loss and other disabilities. Publishes a variety of resource guides on coping with visual impairment.
VISIONS/Services for the Blind and Visually Impaired
500 Greenwich Street, 3rd Floor
New York, New York 10013-1354
(212) 625-1616
Info@visionsvcb.org
http://www.visionsvcb.org
Offers free services to anyone over age 55 with vision problems. Services include self-help study kits, counseling, professional support systems, consumer workshops, and an information center.
Print and Audio Materials
National Library Service for the Blind and Physically Handicapped
Library of Congress
1291 Taylor Street, NW
Washington, DC 20011
1-800-424-8567
(202) 707-5100
nls@loc.gov
http://www.loc.gov/nls
Provides free library service to individuals with visual impairments. Offers Braille and large print materials and recorded books and periodicals.
American Printing House for the Blind
1839 Frankfort Avenue
P.O. Box 6085
Louisville, KY 40206-0085
1-800-223-1839
(502) 895-2405
http://www.aph.org
Provides free subscriptions to Reader's Digest, Newsweek, and other magazines on disposable audiocassettes. Provides Reader's Digest in Braille.
Associated Services for the Blind
919 Walnut Street, 2nd Floor
Philadelphia, PA 19107
(215) 627-0600
http://www.asb.org
Provides subscriptions (for a nominal fee) to magazines such as: Family Circle, Fortune, Smithsonian, Science News, and others.
Braille Circulating Library, Inc.
2700 Stuart Avenue
Richmond, VA 23220
(804) 359-3771
(804) 359-3743
Loans Braille materials, talking books, audiocassettes, and large-print Christian materials.
Choice Magazine Listening
85 Channel Drive
Port Washington, NY 11050
(516) 883-8280
choicemag@aol.com
http://members.aol.com/CHOICEMAG/
Offers selected articles from popular print magazines on special-speed, 4-track audiocassette, six times each year. Free service nationwide.
Christian Record Services, Inc.
4444 South 52nd Street
P.O. Box 6097
Lincoln, NE 68506
(402) 488-0981
info@christianrecord.org
http://www.christianrecord.org/
Provides a lending library of books in Braille, and large print materials, disks, and cassette tapes.
Jewish Braille Institute (JBI International)
110 E. 30th Street
New York, NY 10016
(212) 889-2525
http://www.jewishbraille.org/
Provides talking books, Braille, and large-print books, a circulating library, and a public education program. Offers counseling and referrals to low vision care in the US.
New York Times/Large Type Weekly
229 W. 43rd Street
New York, NY 10036
(212) 556-1234
1-800-631-2580
Offers subscriptions to The New York Times.
Reader's Digest Large Type Publications
P.O. Box 241
Mount Morris, IL 61054
(800) 431-1246
(815) 734-6963
http://www.rd.com
Offers subscriptions to Reader's Digest in large type.
Recording for the Blind and Dyslexic - Headquarters
The Anne T. MacDonald Center
20 Roszel Road
Princeton, NJ 08540
1-866-732-3585
http://www.rfbd.org
Provides free cassette tapes, textbooks for students, and materials needed for occupational pursuits.
Talking Tapes for the Blind
16 Sunnen Drive, Suite 162
St. Louis, MO 63143-3800
(877) 926-0500
http://www.talkingtapes.org/
info@talkingtapes.org
Provides textbooks on audiocassettes for students who are blind or visually impaired
TIME Magazine Large Edition
P.O. Box 64436
Tampa, FL 33664-4436
1-800-881-2137
Offers subscriptions to the large print weekly edition of TIME.
Vision Foundation, Inc.
818 Mt. Auburn Street
Watertown, MA 02172
(617) 926-4232
1-800-852-3029 (Massachusetts only)
Publishes a catalog of materials available in large print and on audiocassette.
Xavier Society for the Blind
154 E. 23rd Street
New York, NY 10010
(212) 473-7800
Serves as the National Catholic Lending Library and Publishing House. Publishes The Xavier Review in Braille, large print, and audiocassette.
Employment
Job Opportunities for the Blind
National Federation of the Blind
1800 Johnson Street
Baltimore, MD 21230
(410) 659-9314
nfb@nfb.org
http://www.nfb.org/states/newjob.htm
Blinded Veterans Association
477 H Street, NW
Washington, DC 20001-2694
1-800-669-7079
Directories
Directory of Services for Blind and Visually Impaired Persons in the United States and Canada, 25th edition (1998)
American Foundation for the Blind
11 Penn Plaza, Suite 300
New York, NY 10001
1-800-232-3044
afbinfo@afb.org
http://www.afb.org
Living with Low Vision: A Resource Guide for People with Sight Loss, 5th edition (1998)
Resources for Rehabilitation
22 Bonad Road
Winchester, MA 01890
(781) 368-9094
info@rfr.org
http://www.rfr.org
Rehabilitation Resource Manual: VISION, 4th edition (1993)
Resources for Rehabilitation
22 Bonad Road
Winchester, MA 01890
(781) 368-9094
info@rfr.org
http://www.rfr.org
Aging and Vision - Directory of Programs and Services for Older Adults With Impaired Vision (1996)
Lighthouse International
111 E. 59th Street
New York, NY 10022
1-800-334-5497
(212) 821-9200
Eye Care Associations
American Academy of Ophthalmology
P.O. Box 7424
San Francisco, CA 94120-7424
(415) 561-8500
http://www.aao.org
Represents board-certified ophthalmologists in the United States. Offers public information materials and clinical education programs in a variety of formats. Coordinates the National Eye Care Project, a program to provide free or low-cost eye exams for people over age 65 (1-800-222-EYES).
American Optometric Association
243 N. Lindbergh Boulevard
St. Louis, MO 63141
(314) 991-4100
AmOptCCC@aol.com
http://www.aoanet.org
Represents optometrists in the United States. Provides brochures on eye problems for the lay public and professional materials on eye care delivery. Coordinates VISION USA, a program to provide free eye care to uninsured, low-income workers and their families.
Resources for Parents and Teachers of Children with Visual Impairments
Association for the Education and Rehabilitation of the Blind and the Visually Impaired
1703 N Beauregard St, Suite 440
Alexandria, VA 22311
(877) 492-2708
(703) 671-6391
http://www.aerbvi.org
Includes educators, rehabilitators, administrators, parents, and houseparents of blind children; agencies, schools, and others interested in the education, guidance, vocational rehabilitation, or occupational placement of the blind and partially-sighted. Cooperates with colleges and universities in conferences and workshops. Presents awards, conducts certification programs, and maintains job exchange services and a speakers' bureau.
Institute for Families of Blind Children
Mail Stop 111
P.O. Box 54700
Los Angeles, CA 90054-0700
(213) 669-4649
http://www.instituteforfamilies.org
Offers support and information to families of blind children. Provides direct counseling support to families at no cost after a diagnosis is made. Offers a nation-wide telephone counseling service. Publishes Retinoblastoma Support News and Parent to Parent as well as the books My Fake Eye, the Story of My Prosthesis and My New Glasses: A Book for Parents and Children. Videos are available.
Lighthouse National Center for Vision and Child Development
111 E. 59th Street
New York, NY 10022
1-800-829-0500
(212) 821-9200
(212) 821-9713 (TDD)
mbeck@lighthouse.org
http://www.lighthouse.org
Develops print and audiovisual products about vision and child development for families, professionals, and the general public. Establishes connections between families, the vision care system, special education programs, and health and education networks. Offers individualized training programs, internships, and student training. Conducts applied and theoretical research.
National Association for Parents of Children With Visual Impairments
P.O. Box 317
Watertown, MA 02471
1-800-562-6265
http://www.spedex.com/napvi/
Offers emotional support for parents of blind or visually impaired children. Provides information, training and assistance, and help in understanding and using available resources. Publishes Awareness, a quarterly newsletter.
National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, DC 20013
1-800-695-0285
nichcy@aed.org
http://www.nichcy.org
Serves as a national information and referral clearinghouse on special education and disability-related issues. Provides information on local, state, or national disability groups for parents and professionals. Emphasizes parent group information. Offers personal responses to public inquiries. Provides prepackaged information to frequently asked questions. Publishes News Digest and Transition Summary. Reports on current practices that assist people with disabilities. Gives technical assistance to parent and professional groups.
National Parent to Parent Support and Information System
P.O. Box 907
Blue Ridge, GA 30513
1-800-651-1151
(706) 632-8822
Judd103w@wonder.em.cdc.gov
http://www.iser.com/NPPSIS-GA.html
Coordinates a database of children with special needs or rare disorders. Assists parents interested in networking with other families.
Low Vision Gateway
http://www.lowvision.org
Provides information and resources for people with low vision and their families. Contains links to information on low vision specialists, low vision aids, organizations that provide support and assistance, and resources for parents and teachers. Sponsored by The Internet Low Vision Society and the Low Vision Centers of Indiana.
Disease Specific Organizations
(The) Achromatopsia Network
P.O. Box 214
Berkeley, CA 94701-0214
Editor@achromat.org
http://www.achromat.org
Provides information about achromatopsia and about the resources that are available to meet the special needs of those affected by this disorder, which is characterized by severe color vision defect and poor visual acuity. Seeks to promote awareness and education about achromatopsia. Assists patients and family members in networking. Publishes a newsletter and other publications.
American Autoimmune Related Diseases Association, Inc.
(AARDA)
22100 Gratiot Avenue
E. Detroit, MI 48021
(586) 776-3900
(800) 598-4668 (Literature Requests)
http://www.aarda.org/
Dedicated to bringing a national focus to autoimmune diseases, conditions caused by the body attacking itself. Provides information on eye-related diseases include Behcet's disease, Graves' disease, multiple sclerosis, myasthenia gravis, sarcoidosis, Sjögren's syndrome, temporal arteritis (giant cell arteritis), and uveitis.
American Behcet's Association
P.O. Box 19957
Amarillo, TX 79114
1-800-7BEHCETS
www.behcets.com
Provides support and information to individuals with Behcet's disease, symptoms of which include ocular inflammation (uveitis). Publishes a quarterly newsletter and distributes patients pamphlets. Coordinates a pen pal/phone pal network. Provides physician referrals. Coordinates a network of local support groups. Holds an annual international conference.
American Health Assistance Foundation
22512 Gateway Center Dr.
Clarksburg, MD 20871
1-800-437-2423
(301) 948-3244
http://www.ahaf.org
Funds research on glaucoma and macular degeneration around the world. Educates the public about the dangers of these diseases and provides important information and resources to patients, caregivers, and loved ones on ways to cope with age-related diseases. Publishes a low vision resource list, the Macular Degeneration Research News, the National Glaucoma Research Report, and other patient-education materials on glaucoma and macular degeneration.
Association for Macular Diseases
210 E. 64th Street, 8th Fl
New York, NY 10021
(212) 605-3719
http://www.macula.org/association/
about.html
Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.
Benign Essential Blepharospasm Research Foundation
P.O. Box 12468
Beaumont, TX 77726-2468
(409) 832-0788
bebrf@blepharospasm.org
http://www.blepharospasm.org
Distributes informational materials on benign essential blepharospasm. Provides a support system for persons who suffer from the disease. Publishes a bimonthly newsletter. Coordinates a video lending library.
Eye Bank Association of America
1015 18th St. NW
Suite 1010
Washington, DC 20036
(202) 775-4999
info@restresight.org
http://www.restoresight.org
Establishes medical standards for evaluating and distributing eyes for corneal transplantation and research. Certifies eye banks and technicians. Awards annual grants used for research and transplantation.
(The) Foundation Fighting Blindness
11435 Cronhill Dr.
Owings Mills, MD 21117-2220
1-888-394-3937
(410) 568-0750
(800) 683-5555 (TDD)
info@blindness.org
http://www.blindness.org
Acts as a clearinghouse and distributor of self-help program information. Sponsors research on the cause, prevention, and treatment of retinitis pigmentosa, Usher's syndrome, macular degeneration, and other retinal degenerative conditions. Conducts education programs for those affected by the disorders as well as professionals and the general public. Coordinates a national information and referral service and the Retinal Donor program. Publishes newsletters and other publications.
(The) Glaucoma Foundation
33 Maiden Lane, 6th Floor
New York, NY 10038
1-800-452-8266
(212) 651-1900
glaucomafdn@mindspring.com
http://www.glaucomafoundation.org
Coordinates public education activities and encourages routine eye examinations. Funds research on the molecular genetics of glaucoma and on optic nerve regeneration. Provides referral to glaucoma specialists. Publishes public and patient education materials, including a newsletter, Eye to Eye.
Glaucoma Research Foundation
490 Post Street, Suite 1427
San Francisco, CA 94102
1-800-826-6693
(415) 986-3162
http://www.glaucoma.org
Conducts patient education activities. Maintains the Glaucoma Eye Donor Network, provides multi-disciplinary seminars, and conducts collaborative studies. Publishes Gleams, a quarterly newsletter and Understanding and Living with Glaucoma, a reference guide for patients and their families.
International Children's Anophthalmia Network (ICAN)
Genetics
Albert Einstein Medical Center
5501 Old York Road
Philadelphia, PA 19141
1-800-580-4226
(215) 456-8722
http://www.ioi.com/ican
Provides information on anophthalmia and microophthalmia. Coordinates a patient registry. Offers referrals to local resources. Coordinates gatherings for individuals with anophthalmia/microophthalmia and their families. Publishes a newsletter, The Conformer.
Macular Degeneration International
6700 North Oracle Road, Suite 121
Tucson, AZ 85704
1-800-683-5555
MDINFO@blindness.org
http://www.maculardegeneration.org/
Provides support for people affected by inherited macular degenerations including Stargardt's disease, cone or cone/rod dystrophy, Best's disease, juvenile retinoschisis, and juvenile macular dystrophy. Coordinates a patient network. Membership includes a resource binder and a subscription to a biannual newsletter.
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
(914) 428-7100
http://www.modimes.org
Develops and distributes health care materials for health professionals and the public on genetic and congenital diseases and disorders. Offers public and professional health education and community service programs to improve maternal and newborn health. Works with other organizations to initiate and implement community programs of prenatal care education and service. Awards basic and clinical research grants to scientists interested in genetic and congenital disorders.
National Association for Pseudoxanthoma Elasticum
8764 Manchester Road, Suite 200
St. Louis, MO 63144-2724
(314) 962-0100
pxenape@napxe.org
http://www.pxenape.org
Provides information on pseudoxanthoma elasticum (PXE), a systemic disease that causes the body to produce defective connective tissue, and in the eye may cause retinal disease. Publishes a newsletter.
National Graves' Disease Foundation
P.O. Box 1969
Brevard, NC 28712
(828) 877-5251
http://www.ngdf.org/
To provide current medical information and referral and resource information to people with Graves' disease, a leading cause of overactive thyroid. Publishes a periodic newsletter. Coordinates public and professional education on Graves' disease.
National Keratoconus Foundation
8733 Beverly Blvd., Suite 201
Los Angeles, CA 90048
1-800-521-2524
Info@nkcf.org
http://www.nkcf.org/
Sponsors basic and clinical research as well as a public education program including self-help groups and seminars. Provides information to patients and eye care practitioners.
National Marfan Foundation
22 Manhasset Ave.
Port Washington, NY 11050
1-800-8-MARFAN
(516) 883-8712 x10
http://www.marfan.org
Disseminates information about Marfan syndrome, a genetic disorder of the connective tissues in which dislocated lenses, cataract, and retinal detachment are ocular symptoms. Provides a communication network for patients and their family members. Supports and encourages research. Publishes The Marfan Syndrome, a comprehensive booklet on the disease, and A Guide for Eye Care Professionals.
National Organization for Albinism and Hypopigmentation
PO Box 959
East Hempstead, NH 003826-2310
1-800-473-2310
(603) 887-2310
http://www.albinism.org
Educates teachers, health care professionals, and the public about albinism and hypopigmentation. Provides support to individuals and their families. Encourages research on the cause, results, and treatment of the disorder. Maintains a speakers' bureau. Information packets are available on request.
National Organization on Rare Disorders
55 Kenosia Ave.
PO Box 1968
Danbury, CT 06813-1968
1-800-999-6673
(203) 744-0100
(203) 797-9590 (TDD)
orphan@nord-rdb.com
http://www.rarediseases.org
Acts as a clearinghouse for information about rare disorders. Fosters networks between families with similar disorders. Educates the general public and medical profession about the existence, diagnosis, and treatment of rare disorders.
National Retinoblastoma Support Group
P.O. Box 317
Watertown, MA 02272-0317
1-800-562-6265
(617) 972-7441
Serves as an information source on genetics and treatment options related to retinoblastoma. Coordinates a patient network. Conducts conferences and meetings. Publishes a newsletter.
National Toxocariasis Foundation
815 Hillsboro Road
Edwardsville, IL 62025-1822
(618) 659-7483
maditon_co@idea.ag.uiuc.edu
Coordinates Project Mustard Seed, a public awareness campaign aimed at preventing toxocariasis, a parasitic infection that can cause blindness.
PXE International
4301 Connecticut Ave, NW, Ste. 404
Washington, DC 20008-2304
(202) 362-9599
info@pxe.org
http://www.pxe.org
Initiates and supports research on pseudoxanthoma elasticum (PXE). Provides support and education in the form of publications, online discussion groups, a website and conferences for affected individuals and their families. Provides peer consultation for health care providers. Coordinates offices worldwide, the PXE International Blood and Tissue Bank, and the PXE Research Consortium.
Sjögren's Syndrome Foundation
8120 Woodmont Ave., Suite 530
Bethesda, MD 20814
(301) 718-0300
Provides support and education for people with Sjögren's syndrome and information to the medical community through local chapters. Publishes Moisture Seekers (newsletter) and The Sjögren's Syndrome Handbook. Distributes information on the complications of Sjögren's disease including dry eye (keratoconjunctivitis sicca).
Stevens Johnson Syndrome Foundation
PO Box 350333
Westminster, CO 80035-0333
(303) 635-1241
sjsupport@aol.com
http://www.sjsupport.org
Provides information and support for people with Stevens Johnson syndrome and toxic epidermal necrolysis, skin and eye problems associated adverse drug reactions. Encourages public awareness of adverse reactions to drugs.
Stickler Involved People (SIP)
15 Angelina Drive
Augusta, KS 67010
(316) 775-2993
sip@sticklers.org
http://www.sticklers.org
Provides information and support to people with Stickler syndrome, a connective tissue disorder that affects bones and joints, the heart, eyes, and ears. Publishes a quarterly newsletter.
Thyroid Foundation of America
One Longfellow Place, Suite 1518
Boston, MA 02114
1-800-832-8321
Info@allthyroid.org
http://www.tsh.org
Provides information and support for thyroid patients and health professionals. Raises and distributes funds for thyroid research. Offers a referral service, written information, and references about thyroid disorders including Graves' disease.
VHL Family Alliance
171 Clinton Road
Brookline, MA 02445-5815
1-800-767-4845
(617) 277-5667
info@vhl.org
http://www.vhl.org
Provides current information on von Hippel-Lindau syndrome, an inherited cancer that may cause tumors of the retina as well as other parts of the body. Coordinates an international network of family support groups. Publishes the VHL Family Forum (newsletter).
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