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(The) 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.
AFB Senior Site
1-800-232-5463
seniorsite@afb.net
http://www.afb.org/seniorsite
• Designed to help older Americans recently diagnosed with eye diseases, and their family members cope with the changes that accompany vision loss. Connects seniors and their loved ones to timely and useful information including links to community-based services, home design tips that maximize safety and independence, tools that help people continue daily activities, and inspiring stories. Created by the American Foundation for the Blind.
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).
Alliance for Eye and Vision Research
12300 Twinbrook Parkway, Suite 250
Rockville, MD 20852-1606
(240) 221-2905
http://www.eyeresearch.org
• A coalition of organizations that includes ophthalmic and optometric professionals, consumer advocates and industry which is dedicated to educating Congress and the public about the economic and societal value of federally funded eye and vision research.
AMD Alliance International
1929 Bayview Avenue
Toronto, Ontario
CANADA M4G 3E8
1-877-263-7171
(416) 486-2500x7505
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 pediatric ophthalmologists in their local areas.
American Association of Eye and Ear Hospitals
1100 Wilson Boulevard
Suite 1200
Arlington, VA 22209
http://www.aaeeh.org
• The American Association of Eye And Ear Hospitals is comprised of the premier centers for specialized eye and ear procedures in the world. Association members are major referral centers, offer some of the most innovative teaching programs in the country, and routinely treat the most severely ill eye and ear patients. The mission of these specialty institutions requires them to maintain leading edge technologies, enabling them to provide highly specialized services not available in general acute care hospitals.
American Association of the Deaf-Blind (AADB)
8630 Fenton St., Suite 121
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 College of Medical Genetics (ACMG)
9650 Rockville Pike
Bethesda, MD 20814-3998
• Represents the medical genetics profession dedicated to making genetic services available to and improve the health of the public. Promotes the development and implementation of methods to diagnose, treat and prevent genetic diseases. Offers a “Find a Geneticist” service.
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 Diabetes Association
ATTN: National Call Center
1701 North Beauregard Street
Alexandria, VA 22311
(800) 342-2383
AskADA@diabetes.org
http://www.diabetes.org/home.jsp
• American Diabetes Association Hours of operation are Monday - Friday, 8:30 AM-8 PM Eastern Standard Time. The American Diabetes Association funds research, publishes scientific findings, provides information and other services to people with diabetes, their families, health professionals and the public. Contact ADA for diabetes-related questions or to request a diabetes information packet. Spanish language consumer website.
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
1-800-365-2219
http://www.aoa.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. Coordinates InfantSEE, a public health program designed to ensure early detection of eye conditions in babies. Member optometrists provide a free comprehensive infant eye assessment to children younger than one year. A service of the AOA in partnership with The Vision Care Institute of Johnson & Johnson Vision Care. Locate a AOA participant on the InfantSEE website www.infantsee.org or by phone at (888) 396-3937.
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
• Promotes 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 608
Earlysville, VA 22936-0608
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 (ASOPRS)
5841 Cedar Lake Road, Suite 204
Minneapolis, MN 55416
(952) 646-2038
http://www.asoprs.org
• Dedicated to advance training, education, research, and the quality of clinical practice in the fields of aesthetic, plastic, and reconstructive surgery specializing in the face, eyelids, orbits, and lacrimal system. Provides information on anophthalmos and orbital implants, blepharospasm, ptosis and other eyelid disorders, excessive tearing, and thyroid disease and the eye.
American Uveitis Society
3535 Bienville Avenue
Suite W380
New Orleans, LA 70119
http://www.uveitissociety.org/pages/index.html
• Increases knowledge regarding uveitis in the medical and research professions through instructional courses, clinics, lectures, and seminars, at which members and guest speakers present subjects of current interest and importance. Promotes and disseminates knowledge of the treatment of uveitis to the public. Encourages and develops uveitis investigation and research. Provides online search for uveitis specialists.
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
1-877-492-2708
(703) 671-4500
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.
AWARE
P.O.Box 996
Mohegan Lake, NY 10547
(914) 528-5120
info@visionaware.org
http://www.VisionAWARE.org
• Provides extensive self-help information on adapting everyday activities and locating helpful services and independent living resources -- for individuals with vision loss, their family members, and those who work with them. Offers a vast collection of free self-help information and materials to increase personal independence, options, and opportunities for those who are blind or have low vision.
Benign Essential Blepharospasm Research Foundation P.O. Box 12468
Beaumont, TX 77726-2468
(409) 832-0788
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
• Links 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.
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.com
• 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.
Coat's Disease Information for Parents
http://www.coatsdisease.org
• Seeks to educate and inform, to increase awareness of Coats' disease, via a website. Provides links to other sites and resources for parents and families.
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.
DB-LINK: National Information Clearinghouse on Children Who are Deaf-Blind345 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 to/for infants, toddlers, children, and youth who are deaf-blind in the U.S.
Eye Bank Association of America1015 Eighteenth Street NW, Suite 1010
Washington, DC 20036
(202) 775-4999
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
655 Beach St.
San Francisco, CA 94109-1336
1-877-887-6327
1-800-222-3937
http://www.eyecareamerica.org/eyecare/
• 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).
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 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.
Friends of the Congressional Glaucoma Caucus Foundation (FCGCF)
1983 Marcus Avenue, Suite 111
Lake Success, NY 11042
1-877- 611-4232
(516) 327-2236
http://www.glaucomacongress.org/
• Coordinates the Student Sight Savers Program, an effort where supervised medical school students conduct screenings for glaucoma and other eye diseases for high-risk groups. Offers grants to cover the free screening of glaucoma in many different regions.
(The) Glaucoma Foundation80 Maiden Lane, Suite 1206
New York, NY 10038
1-800-452-8266
(212) 285-0080
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
251 Post Street, Suite 600
San Francisco, CA 94108
1-800-826-6693
(415) 986-3162
tbrunner@glaucoma.org
http://www.glaucoma.org
• Founded in 1978, The Glaucoma Research Foundation (GRF)is America's oldest and most experienced national institution dedicated solely to its mission: to prevent vision loss from glaucoma by investing in innovative research, education, and support with the ultimate goal of finding a cure.
Glaucoma Research Foundation offers education and support for people and their families through Gleams, a free newsletter providing information about glaucoma treatment and research updates. Gleams is available in print and by e-mail.
Understanding And Living With Glaucoma, 32 page booklet writte by and for people with glaucoma.
Chilhood Glaucoma, 32 page reference guide for parents of children with glaucoma.
Guide Dogs for the Blind
P.O. Box 151200
San Rafael, CA 94915-1200
1-800-295-4050
http://www.guidedogs.com
• Provides Guide Dogs and training in their use to visually impaired people throughout the United States and Canada. Services are free.
(The) Hadley School for the Blind700 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)
141 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.
Independent Living Services for Older Individuals Who Are BlindU.S. Department of Education, OSERS
400 Maryland Avenue, SW, Room 3326, MES
Washington, DC 20202-2741
(202) 245-7454
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.anophthalmia.org
• 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.
Jewish Braille Institute of America110 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.
Knights Templar Eye Foundation1000 East State Parkway
Suite I
Schaumburg, IL 60173
(847) 490-3838
http://www.knightstemplar.org/ktef/
• Knights Templar Eye Foundation provides assistance for eye surgery for people who are unable to pay or receive adequate assistance from current government agencies or similar sources.
Lighthouse International111 E. 59th Street
New York, NY 10022
1-800-829-0500
(212) 821-9200
(212) 821-9713 (TDD)
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.
Macula Vision Research Foundation (MVRF)100 Front Street, Suite 300
West Conshohocken, PA 19428
(610) 668-6705
http://www.mvrf.org
• The Foundation’s mission is to find the cause, prevention, treatment and cure for macula vision diseases with the goal of saving sight and providing public education, advocacy and support to those with macular degeneration. Coordinates SupportSight, a service to enhance the quality of life people with macular degeneration through public education programs, small support groups, and a toll-free hotline. Awards the Macula Vision Research Grant to vision scientists and conducts scientific conferences and seminars.
Macular Degeneration Partnership
8733 Beverly Boulevard, Suite 201
Los Angeles, CA 90048
1-888-430-9898
(310) 623-4466
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.
Medicare
7500 Security Boulevard
Baltimore, MD 21244-1850
1-800-MEDICARE
http://www.medicare.gov
National Association for Parents of Children with Visual ImpairmentsP.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
8760 Manchester Road
St. Louis, MO 63144-2724
(314) 962-0100
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 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)
National Institutes of Health
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)
National Institutes of Health
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 Council of Private Agencies for the Blind and Visually Impaired (NCPABVI)
8760 Manchester Road
St. Louis, MO 63144
(314) 961-8235
http://www.agenciesfortheblind.org
• Represents, networks and advocates for organizations that serve people with blindness or visual impairment and their clients. Serves as the unified voice in the field of services to people with blindness or visual impairment for advocacy, public policy, education, ethical management, professional growth and enhanced services.
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)
National Institutes of Health
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)
141 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 8387
Fleming Island, FL 32006
(904) 278-9488
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)
National Institutes of Health
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)
National Institutes of Health
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.
National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS)
National Institutes of Health
Building 31, Room 4C02
31 Center Drive MSC 2350
Bethesda, MD 20892-2350
1-877-226-4267
(301) 496-8190
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), Behcet's disease , and Sjogren's syndrome.
National Institute of Neurological Disorders and Stroke (NINDS)
National Institutes of Health
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 Institutes of Health
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 Institute on Deafness and Other Communication Disorders (NIDCD)
National Institutes of Health
31 Center Drive, MSC 2320
Bethesda, MD 20892-2320
Voice: (301) 496-7243
TTY: (301) 402-0252
Voice: (800) 241-1044
TTY: (800) 241- 1055
http://www.nidcd.nih.gov
• NIDCD supports and conducts research and research training on the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language and provides health information, based upon scientific discovery, to the public.
Distributes Usher Syndrome, and Usher Syndrome: New Insights Lead to Earlier Treatment.
National Keratoconus Assistance Foundation (NKCAF)
2607 Rockefeller Lane, Suite 3
Redondo Beach, CA 90278
(714) 404-8690
• Provides referrals to eye care specialists best qualified to provide contact lens fittings for patients with keratoconus. Offers financial assistance for treatments and surgeries.
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 Institutes of Health
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 the 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 (NORD)
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 Organization of Parents of Blind Children (NOPBC)
1800 Johnson Street
Baltimore, MD 21230-4998
(410) 659-9314
http://www.nfb.org/nfb/Parents_and_Teachers.asp
• Works to provide information and support to parents of blind children and to develop and expand resources available to parents and their children. Publishes Future Reflections, a magazine for parents and educators of blind children. NOPBC is a division of the National Federation of the Blind (NFB).
National Society of Genetic Counselors (NSGC)
401 N. Michigan Avenue
Chicago, IL 60611
(312) 321-6834
http://www.nsgc.org/
• Represents the genetic counseling profession. Provides information and support to families who have members with birth defects or genetic disorders and to families who may be at risk for a variety of inherited conditions. Offers a “Find a Counselor” service.
New Eyes for the Needy
549 Millburn Avenue
P.O. Box 332
Short Hills, NJ 07078-0332
(973) 376-4903
neweyesfortheneedy@verizon.net
http://www.neweyesfortheneedy.org
• New Eyes for the Needy provides vouchers for the purchase of new prescription eyeglasses. Eligible clients can receive a voucher through a social service agency or a school nurse, or directly from our office. Clients can present a New Eyes voucher to any participating local optical dispenser, who fits the client with the proper prescription eyeglasses. The dispenser then receives reimbursement directly from New Eyes.
Ocular Melanoma Foundation (OFM)P.O. Box 29261
Richmond,, VA 23242
admin@ocularmelanoma.org
http://www.ocularmelanoma.org/
• Works to increase awareness, enhance education and research, and provide advocacy among both patients and health care professionals regarding ocular melanoma.
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 America211 West Wacker Drive, 17th Floor
Chicago, IL 60606
1-800-331-2020
(312) 363-6001
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
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 - Headquarters20 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
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.
Retinoblastoma International
c/o Children's Hospital Los Angeles
4650 Sunset Boulevard MS#88
Los Angeles, CA 90027
(323) 669-2299
http://www.retinoblastoma.net/
• Supports research, education, clinical care, safer/more effective treatments, early diagnosis and awareness related to retinoblastoma. Provides online information to parents, family, and friends, as well as medical education and hands-on training in the management of retinoblastoma to health care professionals.
Sight for Students888-290-4964
sfsinfo@vsp.com
http://www.sightforstudents.org
• Sight for Students, a Vision Service Plan (VSP) program in partnership with The Entertainment Industry Foundation, provides eye exams and glasses to children 18 years and younger whose families cannot afford vision care. Spanish program flier available on website.
Sjögren's Syndrome Foundation (SSF)
6707 Democracy Boulevard, Suite 325
Bethesda, MD 20817
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 syndrome 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
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 Blind16 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.
USA Aniridia Network Suite 101 PMB #109
1138 N. Germantown Parkway
Cordova, TN 38016
(901) 752-8835
http://www.aniridia.net
• The USA Aniridia Network is a non-profit organization dedicated to assisting those with low vision or blindness due to aniridia, a genetic eye disease. Support services, educational and social programs, and medical conferences help people with aniridia, their families, teachers, employers, and the medical community.
VHL Family Alliance171 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).
(The) Vision of Children Foundation
12730 High Bluff Drive, Suite 250
San Diego, CA 92130
(858) 799-0810
http://www.visionofchildren.org
• Dedicated to curing childhood hereditary blindness, including ocular albinism and other related genetic vision disorders. Sponsors genetic research to gain scientific understanding and develop therapies and cures for these conditions. Provides information and support to families of blind and visually impaired children and to other organizations and service providers. Seeks to increase awareness among parents and medical practitioners of the warning signs of ocular diseases in newborns. Works to develop the first Patient Database Registry for ocular albinism and other genetic vision disorders.
VISION USA
1-800-766-4466
http://www.aoa.org/visionusa.xml
• 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 Blind154 E. 23rd Street
New York, NY 10010-4595
1-800-637-9193
(212) 473-7800
• 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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