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Prevent Blindness offering resources for education, to raise awareness for Stargardt disease



Prevent Blindness provides free resources on Stargardt disease, including a webpage, fact sheets, expert interview video and social media graphics, to educate the public and professionals on the inherited retinal disease.

(Image credit: Adobe Stock/Stokkete)

(Image credit: Adobe Stock/Stokkete)

Prevent Blindness has created new educational materials on Stargardt disease, a form of inherited retinal disease (IRD).

Coinciding with May’s IRD Genetic Testing Awareness Month, Prevent Blindness now offering a dedicated webpage, fact sheets, a new Focus on Eye Health Expert Series episode, and social media graphics.

According to a Prevent Blindness news release, the effort is supported by funding from Alkeus Pharmaceuticals Inc.1

“Although there is no known cure for Stargardt disease today, there is promising new research being conducted through clinical trials,” Jeff Todd, president and CEO of Prevent Blindness, said in a news release. “We encourage patients to speak with their eye doctors about their risk for Stargardt disease and other IRDs, as well as how to complete genetic testing to determine the best treatment path to preserve their vision.”

Stargardt disease is sometimes referred to as Stargardt macular degeneration, Stargardt macular dystrophy or juvenile macular dystrophy. Stargardt disease affects central vision due to a buildup of fatty material in the macula and is most commonly caused by a variant in the ABCA4 gene.

According to the Cleveland Clinic, there are an estimated 30,000 to 200,000 people with Stargardt disease in the United States.2

The most common symptom of Stargardt disease is a slow loss of central vision in both eyes. Other symptoms may include:

  • Dark, gray, black, or hazy spots in the center of your vision
  • Sensitivity to light
  • Blurry vision that cannot be corrected with glasses
  • Difficulty seeing small details
  • Needing more time for your eyes to adjust between light and dark places
  • Difficulty seeing in the dark or low light
  • Color blindness
  • Lack of depth perception
  • Lack of contrast

Prevent Blindness also presents its Focus on Eye Health Expert series, including an episode dedicated to Stargardt disease featuring Elias Traboulsi, MD, Med, a pediatric ophthalmologist and geneticist in the Department of Ophthalmology, Cleveland Clinic.3

Genetic testing is important for IRD diagnosis, including Stargardt disease. It may help to identify potential treatment options and create clinical trial opportunities for patients, as well as inform them about the potential risk of disease to other family members.

To learn more about IRDs and benefits of genetic testing, visit Foundation Fighting Blindness at FightingBlindness.org/genetic-testing. 

For more information on Stargardt disease, visit PreventBlindness.org/stargardt-disease. For additional information on inherited retinal diseases and genetic testing for vision issues, visit PreventBlindness.org/inherited-retinal-diseases.

For information on clinical trials specifically for eye disease and vision, please visit PreventBlindness.org/clinical-trials.

1. Prevent Blindness Offers New Resources for Education and to Raise Awareness for Stargardt Disease - Prevent Blindness. Published May 21, 2024. Accessed May 21, 2024. https://preventblindness.org/new-stargardt-disease-resources/
2. Stargardt Disease: Diagnosis, Causes & Treatment. Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/24298-stargardt-disease
3. Prevent Blindness. Stargardt Disease. YouTube. Published May 20, 2024. Accessed May 21, 2024. https://www.youtube.com/watch?v=S9TSFli3DDY
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