Achromatopsia Network
P.O. Box 214
Berkeley, CA 94701-0214
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.
Agency for Healthcare Research and Quality (AHRQ)
U.S. Department of Health and Human Services
540 Gaither Road
Rockville, MD 20850
(301) 427-1364
1-800-358-9295 (AHRQ Clearinghouse)
http://www.ahrq.gov
Promotes effective, appropriate, high-quality health care; increased access to care; and improves the way health services are organized, delivered, and financed. Provides Now You Have a Diagnosis: What's Next, a publication designed to assist patients in their decision-making. (Also available in Spanish).
AMD Alliance International
1929 Bayview Avenue
Toronto, Ontario
CANADA M4G 3E8
1-877-263-7171
(416) 480-7505
http://www.amdalliance.org
Works to raise the awareness about age-related macular degeneration (AMD) and an understanding of available options for treatment, rehabilitation, and support services. Publishes an educational brochure in five languages.
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. Offers a Find a Doctor service on their website to help people locate local board-certified ophthalmologists.
American Academy of Optometry
6110 Executive Boulevard, Suite 506
Rockville, MD 20852
301-984-1441
http://www.aaopt.org
Seeks to maintain and enhance excellence in optometric practice. Fosters research and the dissemination of knowledge in both basic and applied vision science.
American Association for Pediatric Ophthalmology and Strabismus
P.O. Box 193832
San Francisco, CA 94119-3832
(415) 561-8505
http://www.aapos.org
Dedicated to ensuring quality medical and surgical eye care of children and adults with strabismus. Provides information on common eye problems including strabismus, amblyopia, retinopathy of prematurity, conjunctivitis, and learning disabilities. Offers a website tool to help people find pediatic ophthalmologists in their local areas.
American Association of the Deaf-Blind (AADB)
814 Thayer Avenue, Suite 302
Silver Spring, MD 20910-4500
(301) 495-4403
(301) 495-4402--TTY
http://www.aadb.org/
Encourages independent living for individuals who are deaf-blind. Provides technical assistance to persons who are deaf-blind, families, educators, and service providers.
American Autoimmune Related Diseases Association, Inc.
(AARDA)
22100 Gratiot Avenue
E. Detroit, MI 48021
(586) 776-3900
1-800-598-4668 (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 Disease Association
P.O. Box 19952
Amarillo, TX 79114
1-800-723-4238
http://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 Council of the Blind
1155 15th Street, NW, Suite 1004
Washington, DC 20005
1-800-424-8666
(202) 467-5081
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. Publishes The Braille Forum, a free monthly national magazine.
American Foundation for the Blind
11 Penn Plaza, Suite 300
New York, NY 10001
1-800-232-5463
(212) 502-7600
http://www.afb.org
Serves as a one-stop information and referral resource for people who are blind or visually impaired, the people who work with them, and the general public. Conducts a wide variety of programs to support independent living, literacy, employment, and access to technology. Publishes professional materials for blindness and low vision and Talking Books. Offers consultation services to eye care, rehabilitation, and education professionals. Provides referrals to low vision centers. Advocates for legislative change.
American Health Assistance Foundation
22512 Gateway Center Drive
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 patients education materials on glaucoma and macular degeneration.
American Optometric Association
243 N. Lindbergh Boulevard
St. Louis, MO 63141
(314) 991-4100
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. Offers a Find a Doctor service on their website to help people locate optometrists.
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
Promote the independence of blind and visually impaired persons by providing specialized materials, products, and services needed for education and life. Products include Braille and large-print textbooks, Braille teaching tools, and talking books. Provides free subscriptions to Reader's Digest and Newsweek on disposable audiocassettes. Provides Reader's Digest in Braille.
American Society of Ocularists
P.O. Box 7342
Charlottesville, VA 22906-7342
1-866-973-4066
(434) 973-4066
http://www.ocularist.org/
American Society of Ocularists is an international, non-profit, professional and educational organization founded by technicians specializing in the fabricating and fitting of custom-made ocular prosthetics (artificial eyes). Offers referrals to local ocularists.
American Society of Ophthalmic Plastic and Reconstructive Surgery
1133 West Morse Boulevard #201
Winter Park, FL 32789
(407) 647-8839
http://www.asoprs.org
Represents ophthalmologists who specialize in reconstructive surgery involving the eye and surrounding structures. Provides information on anophthalmos and orbital implants, blepharospasm, ptosis and other eyelid disorders, excessive tearing, and thyroid disease and the eye.
Associated Services for the Blind
919 Walnut Street, 2nd Floor
Philadelphia, PA 19107
(215) 627-0600
http://www.asb.org
Offers personal adjustment to blindness training and orientation and mobility training. Provides materials in Braille. Offers computer training using adaptive devices.
Association for Education and Rehabilitation of the Blind and Visually Impaired
1703 N. Beauregard Street, Suite 440
Alexandria, VA 22311
(703) 671-4500
1-877-492-2708
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. Works with state, provencial, and national governments on legislation affecting services to blind and visually impaired individuals.
Association for Macular Diseases
210 E. 64th Street
New York, NY 10021
(212) 605-3719
http://www.macula.org
Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.
Association for Retinopathy of Prematurity and Related Diseases (ROPARD)
P.O. Box 250425
Franklin, MI 48025
1-800-788-2020
http://www.ropard.org
Dedicated to eliminating the problems of low vision and blindness in children caused by premature birth and retinal disease, by funding clinical research to understand, treat, and prevent retinopathy of prematurity (ROP) and related retinal diseases. Funds innovative work on the development of new low vision devices, teaching techniques and services for children who are visually impaired and their families.
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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.
Blinded Veterans Association
477 H Street, NW
Washington, DC 20001
1-800-669-7079
(202) 371-8880
http://www.bva.org
Link veterans with services, rehabilitation training and other benefits, and helps them find jobs. Offers spouses and dependent children of blinded veterans a chance to continue their education through the Kathern F. Gruber Scholarship Program.
Braille Circulating Library, Inc.
2700 Stuart Avenue
Richmond, VA 23220
(804) 359-3743
(804) 359-3771
Loans Braille materials, talking books, audiocassettes, and large print Christian materials.
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Centers for Disease Control and Prevention (CDC)
U.S. Department of Health and Human Services
1600 Clifton Road, NE MS D-25
Atlanta, GA 30333
1-800-311-3435 (Office of Communications)
(404) 639-3534
http://www.cdc.gov
Promotes health and quality of life by preventing and controlling disease, injury, and disability. Provides information on diseases including AIDS/HIV, cytomegalovirus, onchocerciasis (river blindness), schistosomiasis, toxocariasis,and toxoplasmosis.
Children's Glaucoma Foundation (CGF)
2 Longfellow Place, Suite 201
Boston, MA 02114
(617) 227-3011
http://www.childrensglaucoma.org
Serves to increase the awareness of the symptoms and encourage parents and doctors to screen infants and children for glaucoma.
Choice Magazine Listening
85 Channel Drive
Port Washington, NY 11050
1-888-724-6423
(516) 883-8280
http://www.choicemagazinelistening.org
Offers selected articles from popular print magazines on special-speed, 4-track audiocassette, available through the Library of Congress. Provides free service nationwide to eligible persons.
Christian Record Services, Inc.
4444 South 52nd Street
Lincoln, NE 68516
(402) 488-0981
http://www.christianrecord.org
Provides a lending library of books in Braille, large print materials, and cassette tapes. Provides referrals to local low vision specialists and support groups.
Consensus Development Program
National Institutes of Health
31 Center Drive, MSC 2082
Bethesda, MD 20892-2082
(301) 496-5641
http://consensus.nih.gov
Distributes Clinical Use of Botulinum Toxin Consensus Development Conference Statement, November 12-14, 1990.
Consumer Information Center (CIC)
Pueblo, CO 81009
http://www.pueblo.gsa.gov
Offers free and low-cost Federal publications of consumer interest on topics including children, food and nutrition, health, money management, and travel/hobbies.
Cornea Research Foundation of America
9002 N. Meridian Street, Suite 212
Indianapolis, IN 46260
(317) 844-5610
http://www.cornea.org
The Cornea Research Foundation of America was founded with a mission to restore and preserve vision through clinical research and educational programs relating to disorders and diseases of the eye. Supports research devoted to corneal transplants, intraocular lens complications, refractive surgery and other specialized procedures.
Council of Citizens with Low Vision International
1859 N. Washington Avenue, Suite 2000
Clearwater, FL 33755-1862
1-800-733-2258
(727) 443-0350
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.
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DB-LINK: National Information Clearinghouse on Children Who are Deaf-Blind
345 N. Monmouth Avenue
Monmouth, OR 97361
1-800-438-9376
1-800-854-7013--TTY
http://www.tr.wou.edu/dblink/
Offers information that assists education, medical, and service personnel in providing comprehensive services infants, toddlers, children, and youth who are deaf-blind in the U.S.
Eye Bank Association of America
1015 Eighteenth Street NW, Suite 1010
Washington, DC 20036
(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.
EyeCare America
1-877-887-6327
1-800-222-3937
http://www.eyecareamerica.org/public
EyeCare America provides comprehensive eye exams and care for up to one year, often at no out-of-pocket expense to eligible callers through its Seniors and Diabetes EyeCare Programs. Its Glaucoma EyeCare Program provides a glaucoma eye exam. The EyeCare America Children’s EyeCare Program educates parents and primary care providers about the importance of early childhood (newborn through 36 months of age) eye care and offers a free downloadable educational brochure. EyeCare America is a public service foundation of the American Academy of Ophthalmology (AAO).
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Federal Trade Commission (FTC)
Consumer Response Center
600 Pennsylvania Avenue, NW
Washington, DC 20580
(202) 326-2222
1-877-382-4357
http://www.ftc.gov
Enforces federal antitrust and consumer protection laws. Works to eliminate acts or practices that are unfair or deceptive. Publishes factsheets on making informed decisions about refractive surgery (RK, PRK) and Ortho-K (orthokeratology) and LASIK surgery. Publishes tips on how protect yourself from fraudulent health claims.
Food and Drug Administration (FDA)
5600 Fishers Lane (HFE-88)
Rockville, MD 20857
1-888-463-6332
http://www.fda.gov
Oversees the safety of food, cosmetics, medicines, medical devices, and radiation-emitting products. Provides information on contact lenses, intraocular lenses, refractive surgery, and corneal implants for myopia.
(The) Foundation Fighting Blindness
Executive Plaza 1, Suite 800
11435 Cronhill Drive
Owings Mills, MD 21117-2220
1-888-394-3937
1-800-683-5555 (TDD)
(410) 568-0150
(410) 363-7139 (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 1605
New York, NY 10038
1-800-452-8266
(212) 285-0080
info@glaucomafoundation.org
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.
Guide Dogs for the Blind
P.O. Box 151200
San Rafael, CA 94915-1200
1-800-295-4050
http://www.guidedogs.com
Guide Dogs for the Blind is a nonprofit, charitable organization with a mission to provide Guide Dogs and training in their use to visually impaired people throughout the United States and Canada. Services are free.
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(The) Hadley School for the Blind
700 Elm Street
Winnetka, IL 60093
1-800-323-4238
(847) 446-8111
http://www.hadley-school.org
Promotes independence in blind and visually impaired people through education. Serves students in all 50 states and 90 countries. Program areas include Adult Continuing Education, High School, Family Education and Professional Education. Course materials are delivered in Braille, large-print, audiocassette and online formats. Offers all courses free of charge.
Helen Keller National Center for Deaf-Blind Youths & Adults (HKNC)
111 Middle Neck Road
Sands Point, NY 11050
(516) 944-8900
http://www.hknc.org/
Offers intensive and comprehensive rehabilitation training to individuals who are deaf-blind. Provides evaluation and training in communication skills, adaptive technology, orientation and mobility, independent living, work experience, and other support services.
Illinois Society for the Prevention of Blindness
211 West Wacker Drive
Suite 1700
Chicago, Illinois 60606
visionary@eyehealthillinois.org
(312) 922-8710
(800) 433-4772
(312) 922-8713 (fax)
http://www.eyehealthillinois.org/
The ISPB was founded in 1916 to prevent the tragedy of needless blindness. Dedicated to the care, protection, and preservation of sight, ISPB programs stress education, eye safety, information and research.
The work of the ISPB is supported by the generosity of individuals, businesses, organizations, corporations, and foundations. ISPB receives no government or United Way support. Contributions, remembrances, wills, bequests, and grants make the ISPB's important work possible. Gifts may also include life insurance, stocks, and bonds.
Contributions to the Illinois Society for the Prevention of Blindness are tax deductible to the extent provided by law - #36-2167746
Independent Living Services for Older Individuals Who Are Blind
U.S. Department of Education, OSERS
400 Maryland Avenue, SW, Room 3326, MES
Washington, DC 20202-2741
(202) 205-9362
http://www.ed.gov/programs/rsailob/index.html
Provides training in skills of routine daily living, travel, communication, provision of adaptive devices, low vision services, family and peer counseling, and community integration such as outreach and information and referral. Funded through Title VII, Chapter 2 of the Rehabilitation Act. Programs are available in every state and accessible through each state agency for the blind.
Institute for Families
P.O. Box 54700
Mail Stop 111
Los Angeles, CA 90054-0700
(323) 669-4649
http://www.instituteforfamilies.org
Offers support and information to families of children with visual impairment. Provides direct counseling support to families at no cost after a diagnosis is made. Offers a nationwide 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.
International Children's Anophthalmia Network (ican)
5501 Old York Road
Genetics, Levy 2 West
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.
International Foundation for Optic Nerve Disease (IFOND)
P.O. Box 777
Cornwall, NY 12518
(845) 534-7250
http://www.ifond.org
Promotes research into the causes, prevention, and treatment of optic nerve disease. Disseminates information about optic nerve disease.
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Jewish Braille Institute of America
110 E. 30th Street
New York, NY 10016
1-800-433-1531
(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 U.S.
(The) Jewish Guild for the Blind
15 West 65th Street
New York, NY 10023
1-800-284-4422
(212) 769-6200
http://www.jgb.org
Provides free audio library services to individuals with visual impairments by mail (1600 titles, primarily best sellers) and a national radio reading service broadcasting 7 days, 24 hours.
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 including specific services for children and seniors. Offers a comprehensive selection of educational products, large print materials, talking products, and related specialty items for people with visual impairments. Offers reading and library services, employment and recreation resources, and technology centers.
Lions Clubs International
300 W. 22nd Street
Oak Brook, IL 60523-8842
(630) 571-5466
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.)
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.
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Macular Degeneration International
6700 North Oracle Road, Suite 121
Tucson, AZ 85704
1-800-683-5555
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.
Macular Degeneration Partnership
8733 Beverly Boulevard, Suite 201
Los Angeles, CA 90048
1-888-430-9898
(310) 423-6455
http://www.amd.org
Provides accurate and timely information to patients and family members about AMD, research, experimental treatments, and clinical trials. Provides connections to a variety of resources for low vision and support. Publishes a monthly online newsletter and offers a free e-mail subscription to AMD Update.
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
(914) 428-7100
http://www.marchofdimes.com
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 for prenatal care education and service. Awards basic and clinical research grants to scientists interested in genetic and congenital disorders.
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National Association for Parents of Children with Visual Impairments
P.O. Box 317
Watertown, MA 02471
1-800-562-6265
(617) 972-7441
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 Pseudoxanthoma Elasticum
8764 Manchester Road, Suite 200
St. Louis, MO 63144-2724
(314) 962-0100
http://www.napxe.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 Association for Visually Handicapped
22 W. 21st Street, 6th Floor
New York, NY 10010
(212) 889-3141
(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 Cancer Institute (NCI)
Public Inquiries Office, Suite 3036A
6116 Executive Boulevard, MSC8322
Bethesda, MD 20892-8322
(301) 435-3848
1-800-422-6237
1-800-332-8615 (TTY)
http://www.nci.nih.gov
Conducts and supports research on cancer. Offers information for the general public and cancer patients and their families, including materials on ocular melanoma and retinoblastoma.
National Center for Complementary and Alternative Medicine (NCCAM)
P.O. Box 7923
Gaithersburg, MD 20898
1-888-644-6226 (NCCAM Clearinghouse)
1-866-464-3615 (TTY)
http://nccam.nih.gov
Supports research and evaluation of unconventional medical practices and disseminates this information to the public.
National Dissemination Center for Children with Disabilities
P.O. Box 1492
Washington, DC 20013
1-800-695-0285
(202) 884-8200
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. Gives technical assistance to parent and professional groups.
National Eye Institute (NEI)
31 Center Drive MSC 2510
Bethesda, MD 20892-2510
(301) 496-5248
http://www.nei.nih.gov
Conducts and supports research on eye diseases and vision disorders. Offers free publications for the general public and patients.
National Family Association for Deaf-Blind (NFADB)
111 Middle Neck Road
Sands Point, NY 11050
1-800-255-0411
http://www.nfadb.org/
Serves as the largest national network of families focusing on issues surrounding deaf blindness.
National Federation of the Blind
1800 Johnson Street
Baltimore, MD 21230
(410) 659-9314
http://www.nfb.org
Provides a wide variety of services to visually impaired people. Works with agencies and blind people they serve to provide a cost-effective pathway to jobs with good earnings and benefits. 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.
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 Heart Lung and Blood Institute (NHLBI)
31 Center Drive MSC 2480
Bethesda, MD 20892-2480
(301) 592-8573
(240) 629-3255 (TTY)
http://www.nhlbi.nih.gov
Conducts and supports research related to the causes, prevention, diagnosis, and treatment of heart, blood vessel,lung, and blood diseases; and sleep disorders. Distributes information on sarcoidosis.
National Institute of Allergy and Infectious Diseases (NIAID)
Building 31, Room 7A-50
31 Center Drive MSC 2520
Bethesda, MD 20892-2520
(301) 496-5717
http://www.niaid.nih.gov
Supports research aimed at developing better ways to diagnose, treat and prevent infections, immune system diseases, and allergies. Offers information on HIV infection and AIDS, including cytomegalovirus (CMV) retinitis. Co-sponsors the AIDS Clinical Trials Information Service (1-800-874-2572; (301) 519-0459; http://www.actis.org). Also see Centers for Disease Control and Prevention for information on AIDS/HIV.
National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS)
Building 31, Room 4C02
31 Center Drive MSC 2350
Bethesda, MD 20892-2350
(301) 496-8190
1-877-226-4267
http://www.niams.nih.gov
Conducts and supports research on the many forms of arthritis and diseases of the musculoskeletal system (bones) and the skin. Distributes information on temporal arteritis (giant cell arteritis) and Behcet's disease . Also publishes Questions & Answers about Sjogren's Syndrome.
National Institute of Neurological Disorders and Stroke (NINDS)
National Institues of Health (NIH)
P.O. Box 5801
Bethesda, MD 20824
1-800-352-9424
(301) 496-5751
http://www.ninds.nih.gov
Conducts and supports research on disorders of the brain and nervous system. Distributes information on topics including Behcet's disease, dyslexia, headache, multiple sclerosis, pseudotumor cerebri, septo-optic dysplasia, stroke, temporal arteritis (giant cell ateritis) and von Hippel-Lindau disease.
National Institute on Aging (NIA)
National Institues of Health (NIH)
31 Center Drive MSC 2292
Bethesda, MD 20892-2292
(301) 496-1752
http://www.nia.nih.gov
Promotes healthy aging by conducting and supporting research and public education. Distributes Aging and Your Eyes, part of the Age Page series.
National Keratoconus Assistance Foundation
203 Argonne Avenue, Suite B #444
Long Beach, CA 90803
http://www.nkcaf.org
Provides referrals to eye care specialists best qualified to provide contact lens fittings for patients with keratoconus. Offers assistance in finding financial aid for eye care.
National Keratoconus Foundation
8733 Beverly Blvd., Suite 201
Los Angeles, CA 90048
1-800-521-2524
(310) 423-6455
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 Library of Medicine (NLM)
National Institues of Health (NIH)
U.S. Department of Health and Human Services
8600 Rockville Pike
Bethesda, MD 20894
1-888-346-3656
(301) 594-5983
http://www.nlm.nih.gov
Maintains the world's largest medical library collection and coordinates MEDLINE, a database of millions of references to articles published in medical journals. Provides free online searching of the medical literature through MEDLINEPlus and links to health information topics on the eyes and vision. Provides a drug information guide to more than 9,000 prescription and over-the-counter medications. Maintains a clinical trials database for patients, family members, and members of the public.
National Library Service for Blind and Physically Handicapped
Library of Congress
Washington, DC 20542
1-800-424-8567
(202) 707-5100
(202) 707-0744 (TDD)
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.
National Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 11050
1-800-862-7326
(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
P.O. Box 959
East Hampstead, NH 03826-0959
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 for Rare Disorders
55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
1-800-999-6673
(203) 744-0100
(203) 797-9590 (TDD)
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.
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Office of Rare Diseases, National Institutes of Health
6100 Executive Boulevard
Room 3B01, MSC 7518
Bethesda, MD 20892
(301)402-4336
http://rarediseases.info.nih.gov
Coordinates the Rare Disease Clinical Research Database (RDCRD). Offers information on more than 6,000 rare diseases, current research and clinical trials, and support groups.
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. Coordinates the Eye Patch Club, a support group for families coping with a child's amblyopia treatment. Administers a research program to provide small start-up grants to young scientists.
PXE International
4301 Connecticut Avenue, NW, Suite 404
Washington, DC 20008-2369
(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 world wide, the PXE International Blood and Tissue Bank, and the PXE Research Consortium.
Recording for the Blind and Dyslexic - Headquarters
20 Roszel Road
Princeton, NJ 08540
1-800-221-4792
(609) 520-8031
http://www.rfbd.org
Provides free cassette tapes, textbooks for students, and materials needed for occupational pursuits.
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
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
Offers training programs for public and professionals on coping with low vision. Publishes books and materials related to low vision including Living with Low Vision: A Resource Guide for People with Sight Loss.
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Sjögren's Syndrome Foundation (SSF)
8120 Woodmont Avenue, Suite 530
Bethesda, MD 20814
1-800-475-6473
(301) 718-0300
http://www.sjogrens.org
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
P.O. Box 350333
Westminster, CO 80030
(303) 635-1241
http://www.sjsupport.org
Provides information and support for people with Stevens Johnson syndrome and toxic epidermal necrolysis, skin and eye problems associated with 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.
Talking Tapes/Textbooks for the Blind
16 Sunnen Drive, Suite 162
St. Louis, MO 63143-3800
1-877-926-0500
(314) 646-0500
http://www.talkingtapes.org
Provides textbooks on audiocassettes for students with visual, physical, cognitive, and learning disabilities.
Thyroid Foundation of America
410 Stuart Street
Boston, MA 02116
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.
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VHL Family Alliance
171 Clinton Road
Brookline, MA 02445
1-800-767-4845
(617) 277-5667
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).
VISION USA
1-800-766-4466
http://www.aoa.org/visionusa
Coordinated by the American Optometric Association (AOA). Provides free eye care to uninsured, low-income workers and their families.
VISIONS/Services for the Blind and Visually Impaired
500 Greenwich Street, 3rd Floor
New York, NY 10013-1354
1-888-245-8333
(212) 625-1616
http://www.visionsvcb.org
Offers free services to adults over age 55 and teens with severe vision problems. Services include self-help study kits, counseling, vision rehabilitations training, consumer workshops, and an information center. Provides volunteer and overnight camp services for blind and visually impaired adults and elders and parents of blind children.
Xavier Society for the Blind
154 E. 23rd Street
New York, NY 10010-4595
(212) 473-7800
1-800-637-9193
Serves as the National Catholic Press and Lending Library for the visually impaired. Provides materials in Braille, large print and audiocassette.
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