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Retina Genetics
Living well

Life with low vision can still be full.

Help is available at every stage of vision loss. The earlier you use it, the more independent you can stay.

Find your community Low vision services

Low vision services

A low vision specialist can find the right magnifiers, glasses, filters and lighting for you. Ask your eye doctor for a referral. You do not need to wait until your vision is very poor.

See where to get low vision services ↓

Tinted and filter glasses

Many people with retinal disease are sensitive to glare. Amber, orange or red-tinted lenses can make bright light more comfortable and improve contrast.

Your phone can help

Phones and tablets have built-in zoom, large text, high contrast and screen readers (VoiceOver on iPhone, TalkBack on Android). Free apps can read printed text aloud or describe what the camera sees.

Getting around safely

Orientation and mobility training teaches safe travel, including use of a white cane when needed. Good lighting at home, and contrasting tape on stair edges, help prevent falls.

School and work

Children may qualify for support through an IEP or 504 plan. Adults can ask employers for reasonable accommodations under the Americans with Disabilities Act. State vocational rehabilitation agencies can also help.

Driving

Rules depend on your vision and where you live. Talk honestly with your eye doctor about whether driving, including at night, is safe for you.

Taking care of your feelings.

Learning that you or your child has an inherited eye disease can bring grief, worry and uncertainty. These feelings are normal. Talking with a counselor, and connecting with other families, can help a great deal.

Find your community.

Most inherited retinal diseases have a foundation or family group. They share research news, run family meetings, and keep patient registries that help new studies find people. Search by condition, gene or country, or tap a condition below.

Upcoming events

Saturday, November 14, 2026 · 8:00 AM to 5:00 PM

NYC Choroideremia Patient & Family Meeting

A free day of research updates, local resources and meeting other families affected by choroideremia.

Where: SUNY College of Optometry, 33 West 42nd Street, New York, NY
Hosted by: Choroideremia Research Foundation

Learn more and register

Last checked October 26, 2026. Listing a group does not mean we endorse it.

Where to get low vision services.

These are some of the largest organizations. Many services are free or covered by insurance. When you call, say you have an inherited retinal disease and ask for a low vision evaluation.

New York City area

Lighthouse Guild

Low vision eye exams, magnifiers and devices, technology training, and counseling. Manhattan, Upper West Side (250 West 64th Street).

Call 800-284-4422

Helen Keller Services for the Blind

Low vision clinics, orientation and mobility, daily-living skills, and job training. Brooklyn and Long Island.

Brooklyn 718-522-2122 · Hempstead 516-485-1234

VISIONS Services for the Blind and Visually Impaired

Free in-home vision rehabilitation in all five boroughs and on Long Island, mobility training, technology lessons, and job help.

Call 212-625-1616

Helen Keller National Center

For people with both vision and hearing loss, such as Usher syndrome. Training programs at Sands Point, Long Island, and regional staff across the country.

Andrew Heiskell Braille and Talking Book Library

New York Public Library's free audio, braille and large-print books, mailed to your home.

State services (free if you qualify)

Every state has an agency for people who are legally blind or losing vision. They can pay for low vision exams and devices, mobility training, and help at school or work.

New York State Commission for the Blind

Call 866-871-3000

New Jersey Commission for the Blind and Visually Impaired

Connecticut Bureau of Education and Services for the Blind

Call 860-602-4000

Other states: search the APH ConnectCenter directory for low vision services near you.

Anywhere in the U.S.

Hadley

Free how-to lessons, by phone or online, for adults losing vision: cooking, phones, reading, getting around.

National Library Service (Talking Books)

Free audiobooks, braille and a player, mailed to you at no cost. From the Library of Congress.

American Foundation for the Blind

Guides to daily living, education, employment and technology.

VA Blind Rehabilitation Service

Low vision and rehabilitation services for veterans.

Students

Learning Ally and Bookshare offer audio and accessible textbooks. Perkins School for the Blind has resources for families and teachers.

Guide dogs

Guiding Eyes for the Blind (New York) and The Seeing Eye (New Jersey) train and provide guide dogs at no cost.

Community and advocacy

National Federation of the Blind and American Council of the Blind have local chapters, mentoring and support.

Free phone apps

Be My Eyes connects you with a volunteer or AI that describes what your camera sees.

Why join a patient registry?

Many groups keep a registry: a confidential list of people with a condition and their gene. When a new study starts, researchers use registries to find people who may qualify. Joining is free, and you can usually leave at any time. Ask the group how your information is protected before you sign up.

Outside the U.S., ask your eye doctor about national blindness and low vision organizations in your country. Listing an organization does not mean we endorse it. Phone numbers were checked October 2026.