Blind World

Disease-specific Organizations.

  • (The) Achromatopsia Network.

    P.O. Box 214,
    Berkeley, CA 94701-0214.

    • 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.

  • AMD Alliance International.

    1314 Bedford Avenue,
    Suite 113,
    Baltimore, Maryland 21208.

    • 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 Autoimmune Related Diseases Association, Inc. (AARDA).

    22100 Gratiot Avenue,
    East Detroit, MI 48021.
    (800)598-4668 (Literature Requests).

    • 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 Behçet's Disease Association.

    P.O. Box 15247,
    Chattanooga, TN 37415-0240.
    Toll-free: 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.
    (Phone: 301) 948-3244.
    Toll-free: 1-800-437-2423.

    • 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 East 64th Street,
    New York, NY 10021.
    Phone: (212) 605-3719.

    • Offers education and information on macular disease through seminars, newsletters, and a hotline.
    • Offers counseling to patients and their families.

  • Benign Essential Blepharospasm Research Foundation.

    P.O. Box 12468,
    Beaumont, TX 77726-2468.
    Phone: (409) 832-0788.

    • 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.

  • Children's Glaucoma Foundation (CGF).

    2 Longfellow Place,
    Suite 201,
    Boston, MA 02114.

    • Serves to increase the awareness of the symptoms and encourage parents and doctors to screen infants and children for glaucoma.

  • Eye Bank Association of America.

    1001 Connecticut Avenue, NW,
    Suite 601,
    Washington, DC 20036-5504.
    Phone: (202) 775-4999.

    • 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 (FFB).

    Executive Plaza 1,
    Suite 800,
    11435 Cronhill Drive,
    Owings Mills, MD 21117-2220.
    Phone: (410) 785-1414.
    TDD: (410) 785-9687.
    Toll-free: 1-800-683-5555.
    TDD Toll-Free: 1-800-683-5551.

    • 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.
    Phone: (212) 651-1900.
    Toll-free: 1-800-452-8266.

    • 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.
    Phone: (415) 986-3162.
    Toll-free: 1-800-826-6693. URL:

    • 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.
    Phone: (215) 456-8722.
    Toll-free: 1-800-580-4226.

    • 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.
    Toll-free: (845) 534 7250.

    • Promotes research into the causes, prevention, and treatment of optic nerve disease.
    • Disseminates information about optic nerve disease.

  • Macular Degeneration International.

    6700 North Oracle Road,
    Suite 121,
    Tucson, AZ 85704.
    Phone: (520) 797-2525.
    Toll-free: 1-800-393-7634.

    • Provides support for people affected by inherited macular degenerations including Stargardt's disease, cone or cone/rod dystrophy, Best's disease, juvenile retinoschisis, and juvenile macular dystrophy.
    • Coordinates a patient network.
    • Membership includes a resource binder and a subscription to a biannual newsletter.

  • Macular Degeneration Partnership.

    8733 Beverly Boulevard,
    Suite 201,
    Los Angeles, CA 90048.
    Phone: (310) 423-6455.
    Toll-free: 1-888-430-9898. (recorded information).

    • 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.
    Phone: (914) 428-7100.

    • Develops and distributes health care materials for health professionals and the public on geneticand 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.
    Phone: (303) 832-5055.

    • Provides information on pseudoxanthoma elasticum (PXE), a systemic disease that causes the body to produce defective connective tissue, and in the eye may cause retinal disease.
    • Publishes a newsletter.

  • National Graves' Disease Foundation.

    P.O. Box 1969,
    Brevard, NC 28712.
    Phone: (828) 877-5251.

    • Provides 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 Assistance Foundation.

    795 Bellflower Boulevard,
    Suite #8,
    Long Beach, CA 90815.

    • 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.
    Phone: (310) 423-6455.
    Toll-free: 1-800-521-2524.

    • 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.
    Phone: (516) 883-8712.
    Toll-free: 1-800-8-MARFAN.

    • 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.
    Phone: (215) 545-2322.
    Toll-free: 1-800-473-2310.

    • Educates teachers, health care professionals, and the public about albinism and hypopigmentation.
    • Provides support to individuals and their families.
    • Encourages research on the cause, results, and treatment of the disorder.
    • Maintains a speakers' bureau.
    • Information packets are available on request.

  • National Organization on Rare Disorders.

    55 Kenosia Avenue,
    PO Box 1968,
    Danbury, CT 06813-1968.
    Phone: (203) 744-0100.
    Toll-free: 1-800-999-6673.

    • 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 Toxocariasis Foundation.
    (NOTE - No internet website is available for this resource.)

    815 Hillsboro Road,
    Edwardsville, IL 62025-1822.
    Phone: (618) 659-7483.

    • 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.
    Phone: (781) 784-3817.

    • 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 ResearchConsortium.

  • Sjogren's Syndrome Foundation (SSF).

    8120 Woodmont Avenue,
    Suite 530,
    Bethesda, MD 20814.
    Phone: (301) 718-0300.
    Toll-free: 1-800-475-6473.

    • Provides support and education for people with Sjogren's syndrome and information to the medical community through local chapters.
    • Publishes Moisture Seekers (newsletter) and The Sjogren's Syndrome Handbook.
    • Distributes information on the complications of Sjogren's disease including dry eye (keratoconjunctivitis sicca).

  • Stevens Johnson Syndrome Foundation.

    9285 N. Utica Street,
    Westminster, CO 80030.
    Phone: (303) 430-9559.

    • Provides information and support for people with Stevens Johnson syndrome, toxic epidermal necrolysis, and 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.
    Phone: (316) 775-2993.

    • 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.
    Phone: (617) 726-8500.
    Toll-free: 1-800-832-8321.

    • 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.
    • 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.
    Phone: (617) 232-5946.
    Toll-free: 1-800-767-4845.

    • 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).

End of listings in this category.

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