Selected National Eye Health-Related 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
American Academy of Ophthalmology
P.O. Box 7424
San Francisco, CA 94120-7424
(415) 561-8500
http://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
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.
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
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.org
http://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
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 60521-8842
(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 Visually Handicapped
22 W. 21st Street, 6th Floor
New York, NY 10010
(212) 889-3141
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
1-800-638-7518 - Job Opportunities
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
(847) 843-2020
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
New York, NY 10022-1010
1-800-621-0026
(212) 752-4333
http://www.rpbusa.org
• 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
1-800-621-0026
(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
http://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.
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 02471-0317
1-800-562-6265
(617) 972-7441
http://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
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
Judd103u@wonder.cm.cdc.gov
http://www.nppsis.org
• Coordinates a database of children with special needs or rare
disorders. Assists parents interested in networking with other families.
The Council for Exceptional Children (CEC)
1920 Association Drive
Reston, VA 20191
1-800-328-0272 (V/TTY)
ericec@cec.sped.org
http://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
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 NetworkP.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 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)
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, 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
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 patients education materials on glaucoma
and macular degeneration.
Association for Macular Diseases
210 E. 64th Street
New York, NY 10021
(212) 605-3719
http://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.
P.O. Box 12468
Beaumont, TX 77726-2468
(409) 832-0788
bebrf@ih2000.net
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.
Cogan's Contact Network
http://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
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
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)
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
116 John Street, Suite 1065
New York, NY 10038
1-800-452-8266
(212) 651-1900
glaucomafdn@mindspring.com
http://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
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, Levy 2
Albert Einstein Medical Center
5501 Old York Road
Philadelphia, PA 19141
1-800-580-4226
(215) 456-8722
aemcgenetics@icdc.com
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.
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
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.
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
(310) 423-6455
nkcf@csmc.edu
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
382 Main Street
Port Washington, NY 11050
1-800-8-MARFAN
(516) 883-8712
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
1530 Locust Street, #29
Philadelphia, PA 19102
1-800-473-2310
(215) 545-2322
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
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
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
23 Mountain Street
Sharon, MA 02067
(781) 784-3817
pxe@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 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
http://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).
9285 N. Utica Street
Westminster, CO 80030
(303) 430-9559
sjsupport@aol.com
http://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
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
Ruth Sleeper Hall
40 Parkman Street
Boston, MA 02114-2698
1-800-832-8321
(617) 726-8500
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 02146
1-800-767-4845
(617) 232-5946
vhl@pipeline.com
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).
March 2001