Eye Conditions
Albinism
Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes. Albinism occurs in all racial and ethnic groups throughout the world. In the U.S., approximately one in 18,000 to 20,000 people has some type of albinism.
- NOAH (National Organization for Albinism and Hypopigmentation's) mission is to act as a conduit for accurate and authoritative information about all aspects of living with albinism and to provide a place where people with albinism and their families, in the United States and Canada, can find acceptance, support and fellowship. External link to NOAH website https://albinism.org/
Congenital Rubella Syndrome
Congenital rubella syndrome occurs when the rubella virus in the mother affects the developing baby, usually in the first three months of pregnancy. Since the introduction of the rubella vaccine, cases have decreased dramatically.
- NORD. National Organization for Rare Disorders was founded after the passage of the Orphan Drug Act of 1983 (ODA) to formalize the coalition of patient advocacy groups that were instrumental in passing that landmark law. Since then, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported, and connected. We’re a full-service, mission-driven, and independent nonprofit reimagining a future where every person with a rare disease and their families live their best lives. External link to NORD website https://rarediseases.org/rare-diseases/rubella-congenital/
Glaucoma
Glaucoma is a group of eye disorders that lead to progressive damage to the optic nerve. People with glaucoma can lose nerve tissue, resulting in vision loss.
- The Glaucoma Foundation is an international not-for-profit organization dedicated to fighting glaucoma, the world's leading preventable cause of blindness. External link to the Glaucoma Foundation's website http://www.glaucomafoundation.org/
- The Glaucoma Research Foundation’s mission is to cure glaucoma and restore vision through innovative research. External link to the Glaucoma Research Foundation’s website https://glaucoma.org/understanding-glaucoma
- The Mayo Clinic is the largest integrated, not-for-profit medical group practice in the world. External link to the Mayo Clinic's website https://www.mayoclinic.org/diseases-conditions/glaucoma/symptoms-causes/syc-20372839
- Columbia Ophthalmology Department's Digital Reference of Ophthalmology, an internet-based clinical atlas of ophthalmology, which provides color images of entities encountered in ophthalmic practice accompanied by concisely written text and various ophthalmic diagnostic images. External link to the Digital Reference of Ophthalmology website https://www.vagelos.columbia.edu/departments-centers/ophthalmology/education/digital-reference-ophthalmology/glaucoma
Laurence-Moon-Bardet-Biedl Syndrome (LMBBS)
Laurence-Moon-Bardet-Biedl syndrome (LMBBS) is an autosomal recessive genetic disorder characterized by obesity, retinal degeneration, extra digits on the hands and feet, and intellectual impairment. In an autosomal recessive disorder, both parents must be carriers of the defective gene and both must pass on the defect to the child in order for the child to be affected.
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- NORD. National Organization for Rare Disorders was founded after the passage of the Orphan Drug Act of 1983 (ODA) to formalize the coalition of patient advocacy groups that were instrumental in passing that landmark law. Since then, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported, and connected. We’re a full-service, mission-driven, and independent nonprofit reimagining a future where every person with a rare disease and their families live their best lives. External link to NORD website https://rarediseases.org/rare-diseases/bardet-biedl-syndrome/
Macular Degeneration
Macular Degeneration is the leading cause of vision loss, affecting more than 10 million Americans - more than cataracts and glaucoma combined. At present, Macular Degeneration is considered an incurable eye disease. Macular Degeneration is caused by the deterioration of the central portion of the retina, the inside back layer of the eye that records the images we see and sends them via the optic nerve from the eye to the brain.
- Macular Degeneration Support is a world-wide non-profit public service organization founded by retired educator Dan Roberts. Its mission since 1995 has been to provide information and support for people who are affected by macular degeneration and similar retinal diseases. External link to Macular Degeneration Support website http://www.mdsupport.org/
- Macular Degeneration Foundation is dedicated to educating people about macular degeneration: the various forms of the disease; the status of research into genetic and other causes; new developments in treatment and adaptive technology; and advice on how to cope with reduced or lost central vision. The Foundation's newsletter, The Magnifier, is printed in extra large type and is free. External link to Macular Degeneration Foundation website http://www.eyesight.org/
- Macula Foundation a nationwide support group for individuals and their families endeavoring to adjust to the restrictions and changes brought about by macular disease. External link to Macula Foundation website http://macula.org/
- The American Macular Degeneration Foundation is a non-profit organization committed to the prevention, treatment, and cure of macular degeneration, and empowering those with AMD to live to the fullest. External link to the American Macular Degeneration Foundation website https://www.macular.org/latest-research
Retinitis pigmentosa
Retinitis pigmentosa is a rare, inherited degenerative eye disease that causes severe vision impairment. Symptoms often begin in childhood. They include decreased vision at night or in low light and loss of side vision (tunnel vision). Also called: rod cone dystrophy.
- The American Academy of Ophthalmology's mission is to protect sight and empower lives by serving as an advocate for patients and the public, leading ophthalmic education, supporting research and advancing the profession of ophthalmology. External link to the American Academy of Ophthalmology website https://www.aao.org/eye-health/diseases/what-is-retinitis-pigmentosa
Serpiginous Choroiditis
Serpiginous Choroiditis is one of the conditions in a group termed the white dot syndromes which all involve inflammation of the retina and choroid and are defined by the appearance of white dots in the posterior inner part of the eye (fundus). Serpiginous Choroiditis is a rare recurrent eye disorder characterized by irregularly shaped (serpiginous) lesions involving two layers of the eye surface (the retinal pigment epithelium and the choriocapillaris).
- Columbia Ophthalmology Department's Digital Reference of Ophthalmology, an internet-based clinical atlas of ophthalmology, which provides color images of entities encountered in ophthalmic practice accompanied by concisely written text and various ophthalmic diagnostic images. External link to the Digital Reference of Ophthalmology website https://www.vagelos.columbia.edu/departments-centers/ophthalmology/education/digital-reference-ophthalmology
- NORD. National Organization for Rare Disorders was founded after the passage of the Orphan Drug Act of 1983 (ODA) to formalize the coalition of patient advocacy groups that were instrumental in passing that landmark law. Since then, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported, and connected. We’re a full-service, mission-driven, and independent nonprofit reimagining a future where every person with a rare disease and their families live their best lives. External link to NORD website https://rarediseases.org/rare-diseases/choroiditis-serpiginous/
Stargardt's Disease
Stargardt's disease (also known as fundus flavimaculatus and Stargardt's macular dystrophy) is the most common form of inherited juvenile macular degeneration. Inherited as an autosomal recessive trait, it is a severe form of MD that begins in late childhood, leading to legal blindness. Stargardt's disease is symptomatically similar to age-related macular degeneration, and it affects approximately one in 10,000 children.
- The Foundation Fighting Blindess mission is to drive the research toward preventions, treatments, and cures for blinding diseases, including age-related macular degeneration, retinitis pigmentosa, Usher syndrome, Stargardt disease, Leber congenital amaurosis, and more. Together, these conditions affect more than 10 million Americans and millions more worldwide. External link to website https://www.fightingblindness.org/diseases/stargardt-disease
Usher Syndrome
Usher syndrome is the most common condition that involves both hearing and vision problems. A syndrome is a disease or disorder that has more than one feature or symptom. The major symptoms of Usher syndrome are hearing impairment and retinitis pigmentosa, an eye disorder that causes a person's vision to worsen over time. Some people with Usher syndrome also have balance problems. There are three general types of Usher syndrome. Although the syndrome was first described by Albrecht Von Graefe in 1858, it was named for Charles Usher, a British eye doctor, who believed that the condition was inherited or passed from parents to their children.
- The Foundation Fighting Blindess mission is to drive the research toward preventions, treatments, and cures for blinding diseases, including age-related macular degeneration, retinitis pigmentosa, Usher syndrome, Stargardt disease, Leber congenital amaurosis, and more. Together, these conditions affect more than 10 million Americans and millions more worldwide. External link to the Foundation's website https://www.fightingblindness.org/diseases/stargardt-disease
- The National Institute on Deafness and Other Communication Disorders (NIDCD), part of the National Institutes of Health (NIH), conducts and supports research in the normal and disordered processes of hearing, balance, taste, smell, voice, speech, and language. External link to the NIDCD website https://www.nidcd.nih.gov/health/usher-syndrome
- The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome. External link to the Coalition's website www.usher-syndrome.org.
Charge Syndrome
Charge Syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child.