Eye Health Organizations

The following organizations provide eye health-related information to the public. You may find it useful to contact one or more of these organizations for request information. These organizations also may be able to refer you to resources in your area. Inclusion in this list does not imply endorsement by VisionRx.com.

Directory of Organizations for Specific Visual Impairments and Diseases

Achromatopsia Network
P.O. Box 214
Berkeley, CA 94701-0214
Editor@achromat.org
http://www.achromat.org
o Provides information about achromatopsia and the resources available to meet the special needs of those affected by this disorder, which is characterized by severe color vision deficiency and poor visual acuity. Seeks to promote awareness and education about achromatopsia. Assists patients and family members in networking. Publishes a newsletter and other publications.

American Behcet's Association
P.O. Box 27494
Tempe, AZ 85285-7494
1-800-723-4238
o 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.

Association for Macular Diseases
210 E. 64th Street
New York, NY 10021
(212) 605-3719
http://www.macula.org/assoc.htm
o Offers education and information on macular disease through seminars, newsletters and a hotline. Offers counseling to patients and their families.

Benign Essential Blepharospasm Research Foundation
P.O. Box 12468
Beaumont, TX 77726-2468
(409) 832-0788
bebrf@ih2000.net
http://www.blepharospasm.org/~bebrf
o Distributes informational materials on benign essential blepharospasm. Provides a support system for persons who suffer from the disease. Publishes a bimonthly newsletter. Coordinates a video lending library.

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

Conjunctivitis: The Patients Network
Wellness Web
http://wellweb.com
Villanova, PA
(610) 525-1589

Eye Bank Association of America
1001 Connecticut Avenue, NW
Suite 601
Washington, DC 20036-5504
(202) 775-4999
mailto:sightbaa@aol.com
http://www.restoresight.org
o 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.

Foundation Fighting Blindness
Executive Plaza 1, Suite 800
11350 McCormick Road
Hunt Valley, MD 21031-1014
1-800-683-5555
1-800-683-5551 (TDD)
(410) 785-1414
(410) 785-9687 (TDD)
http://www.blindness.org
o 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.

Glaucoma Foundation
116 John Street, Suite 1605
New York, NY 10038
1-800-452-8266
(212) 285-0080
glaucomafdn@mindspring.com
http://www.glaucoma-foundation.org/info
o Coordinates public education activities and encourages routine eye examinations. Funds research on the molecular genetics of glaucoma and on optic nerve regeneration. Provides referral to glaucoma specialists. Publishes public and patient education materials, including a newsletter, Eye to Eye.

Glaucoma Research Foundation
200 Pine Street, Suite 200
San Francisco, CA 94104
1-800-826-6693
(415) 986-3162
http://www.glaucoma.org
o Conducts patient education activities. Maintains the Glaucoma Eye Donor Network, provides multidisciplinary seminars, and conducts collaborative studies. Publishes Gleams, a quarterly newsletter, and Understanding and Living with Glaucoma, a reference guide for patients and their families.

International Children's Anophthalmia Network (ican)
Genetics, Levy 2
Albert Einstein Medical Center
5501 Old York Road
Philadelphia, PA 19141
1-800-580-4226
(215) 456-8722
aemcgenetics@icdc.com
http://www.ioi.com/ican
o Provides information on anophthalmia and microophthalmia. Coordinates a patient registry. Offers referrals to local resources. Coordinates gatherings for individuals with anophthalmia/microophthalmia and their families. Publishes a newsletter, The Conformer.

Macular Degeneration International
6700 North Oracle Road, Suite 121
Tucson, AZ 85704
1-800-393-7634
(520) 797-2525
TPerski@aol.com
o Provides support for people affected by inherited macular degenerations including Stargardt's disease, cone or cone/rod dystrophy, Best's disease, juvenile retinoschisis, and juvenile macular dystrophy. Coordinates a patient network. Membership includes a resource binder and a subscription to a biannual newsletter.

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
(914) 428-7100
http://www.modimes.org
o Develops and distributes health care materials for health professionals and the public on genetic and congenital diseases and disorders. Offers public and professional health education and community service programs to improve maternal and newborn health. Works with other organizations to initiate and implement community programs of prenatal care education and service. Awards basic and clinical research grants to scientists interested in genetic and congenital disorders.

National Association for Pseudoxanthoma Elasticum
1420 Ogden Street
Denver, CO 80218
(303) 832-5055
o Provides information on pseudoxanthoma elasticum (PXE), a systemic disease, which causes the body to produce defective connective tissue and may cause retinal disease in the eye. Publishes a newsletter.

National Graves' Disease Foundation
2 Tsitsi Court
Brevard, NC 28712
(828) 877-5251
http://www.ngdf.org/
o To provide current medical information as well as referral and resource information to people with Graves' disease, a leading cause of overactive thyroid. Publishes a periodic newsletter. Coordinates public and professional education on Graves' disease.

National Keratoconus Foundation
Cedar-Sinai Medical Towers
8631 W. 3rd Street, Suite 520E
Los Angeles, CA 90048
(310) 855-6455
1-800-521-2524 (California only)
nkcf@csmc.edu
http://www.csmc.edu/nkcf
o Sponsors basic and clinical research as well as a public education program including self-help groups and seminars. Provides information to patients and eyecare practitioners.

National Marfan Foundation
382 Main Street
Port Washington, NY 11050
1-800-8-MARFAN
(516) 883-8712
http://www.marfan.org
o Disseminates information about Marfan syndrome, a genetic disorder of the connective tissues in which dislocated lenses, cataract, and retinal detachment are ocular symptoms. Provides a communication network for patients and their family members. Supports and encourages research. Publishes The Marfan Syndrome, a comprehensive booklet on the disease, and A Guide for Eye Care Professionals.

National Organization for Albinism and Hypopigmentation
1530 Locust Street, #29
Philadelphia, PA 19102
1-800-473-2310
(215) 545-2322
http://www.albinism.org
o Educates teachers, health care professionals, and the public about albinism and hypopigmentation. Provides support to individuals and their families. Encourages research on the cause, results, and treatment of the disorder. Maintains a speakers bureau. Information packets are available on request.

National Organization on Rare Disorders
100 Route 37, P.O. Box 8923
New Fairfield, CT 06812-8923
1-800-999-6673
(203) 746-6518
(203) 746-6927 (TDD)
orphan@nord-rdb.com
http://www.raredisease.org
o 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
o Serves as an information source on genetics and treatment options related to retinoblastoma. Coordinates a patient network. Conducts conferences and meetings. Publishes a newsletter.

National Sjogren's Syndrome Association
366 N. Broadway
Jericho, NY 11753
1-800-475-6473
http://www.sjogren.org/

National Toxocariasis Foundation
815 Hillsboro Road
Edwardsville, IL 62025-1822
(618) 659-7483
maditon_co@idea.ag.uiuc.edu
o Coordinates Project Mustard Seed, a public awareness campaign aimed at preventing toxocariasis, a parasitic infection that can cause blindness.

PXE International
23 Mountain Street
Sharon, MA 02067
(781) 784-3817
pxe@pxe.org
http://www.pxe.org
o Initiates and supports research. Provides support and education in the form of publications, online discussion groups, a web site and conferences for affected individuals and their families. Provides peer consultation for health care providers. Coordinates offices worldwide, the PXE International Blood and Tissue Bank, and the PXE Research Consortium.

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

Stevens Johnson Syndrome Foundation
9285 N. Utica Street
Westminster, CO 80030
(303) 430-9559
sjsupport@aol.com
http://hometown.aol.com/sjsupport/index.html
Provides information and support for people with Stevens Johnson syndrome and toxic epidermal necrolysis, skin and eye problems associated adverse drug reactions. Encourages public awareness of adverse reactions to drugs.

Stickler Involved People (SIP)
15 Angelina Drive
Augusta, KS 67010
(316) 775-2993
sip@sticklers.org
http://www.sticklers.org
Provides information and support to people with Stickler syndrome, a connective-tissue disorder that affects bones and joints, the heart, eyes and ears. Publishes a quarterly newsletter.

Thyroid Foundation of America
Ruth Sleeper Hall
40 Parkman Street
Boston, MA 02114-2698
1-800-832-8321
(617) 726-8500
http://www.clark.net/pub/tfa
o Provides information and support for thyroid patients and health professionals. Raises and distributes funds for thyroid research. Offers a referral service, written information and references about thyroid disorders including Graves' disease.

VHL Family Alliance
171 Clinton Road
Brookline, MA 02146
1-800-767-4845
(617) 232-5946
vhl@pipeline.com
http://www.vhl.org
o 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, a newsletter.