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The impact of Stargardt disease

For Caregivers Living with Stargardt Research

Stargardt disease affects the macula, which is responsible for central vision, and in more severe cases affects the fovea at the center of the macula, which helps people see fine detail. There are many areas of daily life affected. It impacts a person's ability to read and write, drive, recognize friends, and engage in other daily activities.

Stargardt can be especially difficult for children and teens when they are diagnosed, as they seek more independence as they mature. Stargardt can profoundly affect the lives of individuals living with the condition, as well as their families. It's important to recognize the unique challenges they face, and provide appropriate support.

I’m scared of being
called on in class.

— 12-year-old with Stargardt disease

Is there a cure for
Stargardt disease?

Currently, there is no cure
or treatment for Stargardt disease.

Although there are no approved treatments to slow or reverse disease progression, accessibility is incredibly important for those living with Stargardt disease.

Methods of visual rehabilitation (restoring and/or improving functional ability in those with vision impairment) are designed to help people living with Stargardt gain independence in their everyday activities. Vision rehabilitation may include working with specially trained vision occupational therapists to learn about visual rehabilitation techniques and services, including:

Training for independent
living and employment

Assistive technology and
products (such as screen
readers or reading stands)

Video game stimulation

Counseling and
support groups

Services to provide


For Parents, Friends, and Supporters

Stargardt disease can have a dramatic impact on families.

The impact of a Stargardt diagnosis extends to parents, caregivers, siblings, and friends. Searching for answers and support as the condition progresses can feel overwhelming.

Many national organizations dedicate resources to families to ensure they have the information and connections they need to support their loved one with Stargardt, as well as themselves—including free healthcare services, support groups, legal resources, and the shared perspectives of other families living with Stargardt disease. To learn more, see our additional resources.

We don’t want him to lose the chance to reach his goals.

— Parents of 22-year-old with Stargardt disease

Living with Stargardt

Stargardt disease impacts many areas of life—but support is available.

Although there is no cure for Stargardt disease, there are ways to help manage daily life with the condition. Consider the following:


Speak with your doctor about
decreasing vitamin A in your
diet and/or discontinuing
vitamin A supplements


Quit smoking and/or
avoiding secondhand smoke
as much as possible


Use sun protection,
such as sunglasses and hats,
to reduce exposure to
bright light


Explore assistive resources that
can help with school, work, and
the activities of daily life


Learn about resources
available for mental health
support, as needed


Visit a genetic counselor to
discuss family planning

Genetic Testing

Following a diagnosis of Stargardt disease, ask your eye care specialist about genetic testing, which checks for genes known to be responsible for inherited eye diseases and/or specifically Stargardt. The option to undergo this testing can help confirm a diagnosis of Stargardt disease and may also help you or a loved one qualify for a clinical trial. Whatever you decide, it’s an important decision that should be made together with your healthcare team.

It’s also important to know that people with Stargardt have a normal life expectancy; the loss of vision does not impact general health.


Multiple clinical trials are underway for Stargardt disease, and research for inherited eye diseases may also impact this condition in the future.

Ongoing trials continue in the study of Stargardt disease, from the biology and genetics of the condition to retinal diseases in general that can help inform treatment. To date, no FDA-approved treatment exists, but knowledge about the condition continues to advance.

Treatments currently being explored include:

Antibody Treatment

Antibodies are administered to target a specific protein called C5, which plays a role in causing inflammation in the retina. By inhibiting or blocking C5, this treatment aims to reduce the inflammation and damage to slow the progression of retinal diseases.

Gene Therapy

These therapies aim to deliver a corrected version of the faulty gene or a novel gene to function in place of the mutated one, to restore vision by reinstating proper gene function.

RPE (Retinal Pigment Epithelium)
Cell-Based Therapy

This approach involves grafting transplanted RPE to restore the normal function of the retina by replacing the damaged cells with healthy ones.

Oral Treatment

These investigational treatments are delivered by mouth (instead of injection) that may be approved for other conditions.

Dietary Supplementation

Through adding or increasing the amount of certain nourishments in the body, this approach seeks to understand the long-term impact on Stargardt disease.

To learn about the research focused on treating Stargardt disease, see the latest news updates or visit for more information on the studies underway.

Community Support

Discover resources and support for those impacted by Stargardt disease.

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