May declared as IRD and genetic testing month

Offering a variety of free resources on inherited retinal disease, Prevent Blindness has declared the month of May as its second annual “Inherited Retinal Disease (IRD) and Genetic Testing Month.”¹

IRDs are “a group of diseases that can cause severe vision loss or even blindness,” according to the press release. They are a genetic disorder, caused by a change or variant in one or more genes that contribute to proper retinal functioning. IRDs include conditions such as choroideremia, cone-rod dystrophy, Leber congenital amaurosis, retinitis pigmentosa (RP), and Stargardt disease.

The organization’s goal is to educate the public and allied health professionals on IRDs through education videos, webpages, and sharable social media graphics and fact sheets – available in both English and Spanish. New RD information sheets will be available on the website in May, as well.

“Early detection and access to treatment is the key to preventing significant vision loss, including for inherited retinal diseases. And genetic testing may also save sight for patients and their family members,” Jeff Todd, president and CEO of Prevent Blindness, said. “We encourage the public and health professionals to utilize our various free resources to learn more about IRDs, genetic testing, and steps to take today to save vision in the future.”

In addition to the month of May designated for IRD awareness, Prevent Blindness has also declared the third week of the month to the awareness and education of Stargardt disease.

The organization is debuting its new Focus on Eye Health Series episode, “Stargardt Disease: A Conversation with Bryan and Bradford Manning of Two Blind Brothers.” In this episode, Todd talks with both Bryan and Bradford Manning, two brothers living with Stargardt disease. The three discuss the brothers’ journeys, offer advice to parents of children with the disease, and talk about Bryan and Bradford’s nonprofit founded to raise funds for the goal of curing blindness.

Other resources for IRD offered by Prevent Blindness include:

Two other episodes of the organizations’ Focus o Eye Health Series:

“Stargardt Disease,” with Elias Traboulsi, MD, MEd, Pediatric Ophthalmologist and Geneticist, Department of Ophthalmology, Cleveland Clinic.

“Inherited Retinal Disorders and Genetic Testing,” with Alina V. Dumitrescu, MD, Clinical Associate Professor of Ophthalmology and Visual Sciences, Pediatric Ophthalmology and Strabismus, Inherited Eye Disease at the University of Iowa Hospitals and Clinics.

IRD patient testimonials from Brenda Niccum, who is living with RP; and Mariagrazia Buttitta, who has cone dystrophy. Both patients discuss their individual lived experiences around their vision issues and their vision impairment journeys.

Free webinar recordings: Inherited Retinal Diseases and Children’s Vision and Eye Health: What You Need to Know, and Pathway to Diagnosis: Genetic Testing for Inherited Retinal Diseases, offered by the National Center for Children’s Vision and Eye Health at Prevent Blindness.

Reference:

Prevent Blindness Declares May as Inherited Retinal Disease (IRD) and Genetic Testing Month with the goal to educate patients on various forms of IRDs, and the importance of genetic testing. Published April 29, 2025. Accessed April 29, 2025. https://preventblindness.org/2025-ird-awareness-month/