Support Networks

Carmen Willings
teachingvisuallyimpaired.com
Updated April 7, 2024
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The following is a list of support networks and organizations whose mission is to provide information, research, and support to persons with specific visual impairments, and diseases.

The Achromatopsia Network

This is an information network for individuals and families who are affected by achromatopsia and for professionals interested in achromatopsia.  ​

All About Vision

All About Vision provides a wealth of information on many topics related to vision. It includes information on: contact lenses, LASIK & Vision surgeries, eyeglasses, sunglasses, eye exams, visual conditions, cataracts, low vision, computer vision, sports vision, eye safety, nutrition & eyes, children's vision, teens, vision over 40, vision over 60, cosmetic eye procedures, vision insurance, resources and videos.

American Association of Pediatric Ophthalmology and Strabismus (AAPOS)

The goals of the American Association of Pediatric Ophthalmology and Strabismus (AAPOS) are to advance the quality of children's eye care, support the training of pediatric ophthalmologists, support research activities in pediatric ophthalmology, and advance the care of adults with strabismus.

American Diabetes Associations

The American Diabetes Association promotes knowledge of diabetes through public and professional education. Seeks to prevent and cure diabetes and to improve the lives of all people affected by diabetes. ​

American Nystagmus Network

The American Nystagmus Network (ANN) is a non-profit corporation seeking to improve the quality of life for all persons and families affected by nystagmus, through organized community support, education and public awareness.

Angelman Syndrome Foundation

The Angelman Syndrome Foundation provides information about Angelman syndrome and publishes a monthly newsletter, Voices of Angels. ​

Association for Macular Diseases

The Association for Macular Diseases provides support, resources and assistance to individuals with macular disease, their caregivers, and the professional community.

BCM Families Foundation

The Blue Cone Monochromacy (BCM) Families Foundation is a non-profit organization whose mission is to eradicate Blue Cone Monochromacy, a rare genetic x-linked disorder, by supporting the most promising biomedical and scientific research that will lead to a cure.  ​

BrightFocus Foundation

The BrightFocus Foundation offers educational services pertaining to conditions that affect vision or brain function, including glaucoma and macular degeneration. Hosts and records online chats. Offers a toll-free hotline for listening to chats.

Canadian National Institute for the Blind

​The Canadian National Institute for the Blind provides information regarding eye diseases and living with vision loss. CNIB includes information about eyes including eye conditions, eye care, eye safety as well as the opportunity to "ask the expert". The Living with Vision Loss section includes resources on independent living, learning and leisure, safe travel, how-to videos, braille, and guide dogs. Resources also include projects, research grants and awards, and funded projects.

Charge Syndrome Foundation, Inc.

Charge Syndrome Foundation, Inc. provides support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and promote awareness and research regarding its identification, cause, and management.

Children's Glaucoma Foundation

The Children's Glaucoma Foundation is a nonprofit organization dedicated to supporting programs for children with glaucoma.

FOCUS: For Our Children's Unique Sight

FOCUS: For Our Children’s Unique Sight provides information, education, and support to those affected by optic nerve hypoplasia and septo optic dysplasia worldwide.

Foundation Fighting Blindness

The Foundation Fighting Blindness funds research to find treatments and cures for retinal degenerative diseases, including retinitis pigmentosa, macular degeneration, and Usher syndrome. Provides information and referral services.

Glaucoma Research Foundation

The Glaucoma Research Foundation is a national non-profit organization dedicated to finding a cure for glaucoma. Funds glaucoma research worldwide.

ICAN

ICAN a voluntary non-profit organization of families and professionals dedicated to lending support to individuals who want to learn more about microphthalmia and anophthalmia.

International Foundation for Optic Nerve Disease (IFOND)

The International Foundation for Optic Nerve Disease (IFOND) is a website dedicated to the promotion of research into the causes, prevention, and treatment of optic nerve disease and to the dissemination of information about optic nerve disease. www.ifond.org

Lions Clubs

The Lions Club is the world's largest service club organization. Their mission is to empower volunteers to serve their communities, meet humanitarian needs, encourage peace and promote international understanding through Lions clubs. For nearly 100 years, their members have worked on projects designed to prevent blindness, restore eyesight and improve eye health and eye care for hundreds of millions of people worldwide.

Macular Degeneration Foundation

The Macular Degeneration Foundation is dedicated to those who have and will develop macular degeneration. It offers the latest information, news, hope, and encouragement. Includes links to resources such as Low Vision Centers, Therapists, Physicians, and Support Group.

National Keratoconus Foundation (NKCF)

The mission of the National Keratoconus Foundation (NKCF) is to increase the awareness and understanding of keratoconus by providing information to patients, their families, and eye-care professionals. Maintains a patient registry and physician referral, organizes support and discussion groups, and supports scientific research.

National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD) is a nonprofit organization representing all Americans affected by rare diseases.  It provides information for patients and families (assistance programs, information center, online communities, NORD meetings, clinical trials, patient organizations), for medical professions (research grants and resources), for industry, and rare disease information.

National Organization for Albinism and Hypopigmentation (NOAH)

The National Organization for Albinism and Hypopigmentation (NOAH) is a non-profit organization that offers information and support to people with albinism, their families and the professionals who work with them. Publishes a quarterly magazine, Albinism InSight. Educates the public and professionals about albinism and encourages research. Offers information and support to individuals with albinism and their families. Provides services through local chapters, an online community, and biannual national conferences and family summer camps.

Nystagmus Network

The Nystagmus Network is a UK charity run by individuals and families affected by nystagmus. Provides patient information, support and scientific research charity for nystagmus in Europe.

Stargardt's Disease

Stargardt's Disease is a web resource that provides information, news, and research specific to Stargardt's Disease.

The Glaucoma Foundation

Provides free literature and referrals to the public, available through a toll free worldwide hotline: 1-800-GLAUCOMA. Promotes and funds research into the causes of glaucoma and potential cures for the disease, and funds public education projects to provide information about glaucoma and the importance of early detection and treatment. https://glaucomafoundation.org/  ​

​Vision Research ROPARD Foundation

Vision Research ROPARD (Retinopathy of Prematurity and Related Diseases) is a website whose focus is on ROP, PFVS (persistent fetal vascular syndrome, retinoschisis, and FEVR (familial exudative vitreoretinopathy). They offer the most current information on all pediatric retinal diseases.