Guide: Disease Specific

 

The most common eye diseases that lead to low vision and blindness fall into two categories: age-related (age-related macular degeneration, glaucoma, cataracts, diabetic retinopathy, etc.), and genetic diseases (retinitis pigmentosa, Stargardt’s, albinism, etc.). Organizations, websites, and services are available for specific eye conditions to connect you with others who have the same condition and learn more about current research.

 

BrightFocus Foundation
Phone: 800-437-2423 Website: www.brightfocus.org

Educational chats and information about age-related macular degeneration, glaucoma, and vision loss.

National Institutes of Health (NIH) National Eye Institute (NEI)
Phone: 301-496-5248 Website: www.nei.nih.gov/

Find information on eye issues and disorders.

National Organization for Rare Disorders
Phone: 203-744-0100 Website: rarediseases.org/

Patient advocacy organization for individuals with rare diseases. Connect with others with rare eye diseases.

Research to Prevent Blindness
Phone: 800-621-0026 Website: www.rpbusa.org

Online research library for visual disorders.

 

American Behcet’s Disease Association
Phone: 631-656-0537 Website: www.behcets.com
American Diabetes Association
Phone: 800-342-2383 Website: www.diabetes.org

Many eye morbidities are related to diabetes, in particular diabetic retinopathy.

American Macular Degeneration Foundation
Phone: 888-622-8527 Website: www.macular.org

Offer healthy living tips, the latest information, and ways to honor those touched by macular disease.

American Uveitis Society
Phone: 205-325-8507 Website: www.uveitissociety.org
Association for Macular Diseases, Inc.
Phone: 212-605-3719 Website: www.macula.org
Glaucoma Research Foundation
Phone: 800-826-6693 Website: www.glaucoma.org
Hear See Hope (Usher Syndrome)
Phone: 206-451-8155 Website: www.hearseehope.com

Connects parents of children with the illness to create a support network, and helps fund research.

International Children’s Anophthalmia Network
Phone: 800-580-4226 Website: www.anophthalmia.org

Information for parents of children with anophthalmia or microphthalmia.

MD Support
Phone: 888-866-6148 Website: www.mdsupport.org

Information for people with macular degeneration and similar retinal diseases. Monthly call-in support group.

National Keratoconus Foundation
Phone: 800-521-2524 Website: www.nkcf.org
National Marfan Foundation
Phone: 516-883-8712 Website: www.marfan.org
National Organization for Albinism and Hypopigmentation (NOAH)
Phone: 800-473-2310 Website: www.albinism.org