National Eye Health Organizations

The following organizations provide eye health-related information to the public. You may find it useful to contact them about your information request. These organizations may also be able to refer you to resources in your area. Inclusion in this list does not imply endorsement by the National Eye Institute or the National Institutes of Health.

· Eye Care Associations

· General Organizations

· Resources for Parents and Teachers of Children with Visual Impairments

· Disease Specific Organizations

· Selected Resources for People with Low Vision

Eye Care Associations

American Academy of Ophthalmology
P.O. Box 7424
San Francisco, CA 94120-7424
(415) 561-8500
https://www.eyenet.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
https://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.

General Organizations

American Council of the Blind
1155 15th Street, NW, Suite 1004
Washington, DC 20005
1-800-424-8666
(202) 467-5081
info@acb.org
https://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.org
https://www.afb.org

Regional Offices:

Chicago, IL (312) 245-9961
Dallas, TX (214) 352-7222
Atlanta, GA (404) 525-2303
New York, NY (212) 502-7657
San Francisco, CA (415) 392-4845
Washington, DC (202) 457-1487
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.

Lighthouse International
111 E. 59th Street
New York, NY 10022
1-800-829-0500
(212) 821-9200
(212) 821-9713 (TDD)
info@lighthouse.org
https://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 60521-8842
(630) 571-5466
lions@lionsclubs.org
https://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 Visually Handicapped
22 W. 21st Street, 6th Floor
New York, NY 10010
(212) 889-3141
https://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
1-800-638-7518 – Job Opportunities
https://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
(847) 843-2020
https://www.prevent-blindness.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
New York, NY 10022-1010
1-800-621-0026
(212) 752-4333
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
33 Bedford Street, Suite 19A
Lexington, MA 02420
(781) 862-6455
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.

Resources for Parents and Teachers of Children with Visual Impairments

Association for the Education and Rehabilitation of the Blind and the Visually Impaired
4600 Duke Street, Suite 430
P.O. Box 22397
Alexandria, VA 22304
(703) 823-9690
aernet@laser.net
https://www.aerbvi.org
Includes educators, rehabilitators, administrators, parents, and houseparents of blind children; agencies, schools, and other 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 speakers’ bureau.

Institute for Families of Blind Children
P.O. Box 54700
Mail Stop 111
Los Angeles, CA 90054-0700
(213) 669-4649
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
https://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 02471-0317
1-800-562-6265
(617) 972-7441
https://www.spedex.com/NAPVI/index.htm
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 20013-1492
1-800-695-0285
(202) 884-8200
nichcy@aed.org
https://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
Judd103u@wonder.cm.cdc.gov
https://www.nppsis.org
Coordinates a database of children with special needs or rare disorders. Assists parents interested in networking with other families.

ERIC Clearinghouse on Disabilities and Gifted Education
The Council for Exceptional Children (CEC)
1920 Association Drive
Reston, VA 20191
1-800-328-0272 (V/TTY)
ericec@cec.sped.org
https://ericec.org/
Provides resources to educators of children who have disabilities and/or are gifted. Offers information from the ERIC database of educational materials, answers to general questions about disabilities and gifted education, and referrals to other organizations with information on disabilities or giftedness. Distributes special searches available for teachers of blind and deaf-blind students. One of 16 federally-funded clearinghouses in the ERIC system, a nationwide information network sponsored by the U.S. Department of Education, National Library of Education.

Low Vision Gateway
https://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
https://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 that 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
(810)776-3900
(800)598-4668 (Literature Requests)
https://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, Sjogren’s syndrome, temporal arteritis (giant cell arteritis), and uveitis.

American Behcet’s Association
P.O. Box 27494
Tempe, AZ 85285-7494
1-800-723-4238
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
15825 Shady Grove Road, Suite 140
Rockville, MD 20850
1-800-437-2423
(301) 948-3244
https://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 patients education materials on glaucoma and macular degeneration.

Association for Macular Diseases
210 E. 64th Street
New York, NY 10021
(212) 605-3719
https://www.macula.org/macula_old/index.htm
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@ih2000.net
https://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.

Cogan’s Contact Network
https://www.lava.net/~pug/cogans/cogans.html
Offers on-line support and assistance in people living with Cogan’s syndrome.

Eye Bank Association of America
1001 Connecticut Avenue, NW
Suite 601
Washington, DC 20036-5504
(202) 775-4999
sightbaa@aol.com
https://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
Executive Plaza 1, Suite 800
11350 McCormick Road
Hunt Valley, MD 21031-1014
1-800-683-5555
1-800-683-5551 (TDD)
(410) 785-1414
(410) 785-9687 (TDD)
https://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
https://www.glaucoma-foundation.org/info
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
200 Pine Street, Suite 200
San Francisco, CA 94104
1-800-826-6693
(415) 986-3162
https://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, Levy 2
Albert Einstein Medical Center
5501 Old York Road
Philadelphia, PA 19141
1-800-580-4226
(215) 456-8722
aemcgenetics@icdc.com
https://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
1-800-393-7634
(520) 797-2525
TPerski@aol.com
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
https://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
1420 Ogden Street
Denver, CO 80218
(303) 832-5055
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
https://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
Cedar-Sinai Medical Towers
8631 W. 3rd Street, Suite 520E
Los Angeles, CA 90048
(310) 855-6455
1-800-521-2524 (California only)
nkcf@csmc.edu
https://www.csmc.edu/nkcf
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
382 Main Street
Port Washington, NY 11050
1-800-8-MARFAN
(516) 883-8712
https://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
1530 Locust Street, #29
Philadelphia, PA 19102
1-800-473-2310
(215) 545-2322
https://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
100 Route 37, P.O. Box 8923
New Fairfield, CT 06812-8923
1-800-999-6673
(203) 746-6518
(203) 746-6927 (TDD)
orphan@nord-rdb.com
https://www.raredisease.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
23 Mountain Street
Sharon, MA 02067
(781) 784-3817
pxe@pxe.org
https://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 world wide, the PXE International Blood and Tissue Bank, and the PXE Research Consortium.

Sjogren’s Syndrome Foundation
366 N. Broadway
Jericho, NY 11753
1-800-475-6473
(516) 933-6365
https://www.sjogrens.com/
Provides support and education for people with Sjogren’s syndrome and information to the medical community through local chapters. Publishes Moisture Seekers (newsletter) and The Sjogren’s Syndrome Handbook. Distributes information on the complications of Sjogren’s disease including dry eye (keratoconjunctivitis sicca).

Stevens Johnson Syndrome Foundation
9285 N. Utica Street
Westminster, CO 80030
(303) 430-9559
sjsupport@aol.com
https://hometown.aol.com/sjsupport/index.html
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
https://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
Ruth Sleeper Hall
40 Parkman Street
Boston, MA 02114-2698
1-800-832-8321
(617) 726-8500
https://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 02146
1-800-767-4845
(617) 232-5946
vhl@pipeline.com
https://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).

August 2000