CHICAGO—Prevent Blindness has declared May 16-22, 2022 as the third annual “Inherited Retinal Disease (IRD) Genetic Testing Week.” Educational materials, such as a fact sheet, social media graphics, and a dedicated webpage, are available. New this year to IRD Genetic Testing Week are two informational videos. 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, is featured in a new “IRD and Genetic Testing” episode in the Focus on Eye Health Expert Series.

Additionally, Mariagrazia Buttitta provides a patient testimonial about her experience as an individual living with Cone Dystrophy. Buttitta is also a graduate of the A.S.P.E.C.T. (Advocacy, Support, Perspective, Empowerment, Communication, and Training) patient engagement program at Prevent Blindness. This program equips participants with knowledge, skills, and confidence to share their personal stories and become advocates for vision and eye health at the individual, peer-to-peer, community, state, or national levels.
For the third consecutive year, IRD Genetic Testing Week at Prevent Blindness is supported by Spark Therapeutics, a fully integrated company and member of the Roche group dedicated to challenging the inevitability of genetic disease. Spark offers educational resources on IRDs and genetic testing through the Eye Want 2 Know website and a genetic testing initiative, ID YOUR IRD, which offers genetic testing at no cost to eligible patients.
Inherited Retinal Diseases, also referred to as inherited retinal disorders, are a group of diseases that can cause severe vision loss or even blindness. The most common types of IRDs include retinitis pigmentosa, choroideremia, Stargardt disease, cone-rod dystrophy, and Leber congenital amaurosis.
Vision loss from IRDs takes both an economic and emotional toll. According to the recent “The Impact of Inherited Retinal Diseases in the United States of America (US) and Canada from a Cost-of-Illness Perspective” study, the annual cost of IRDs to society, is estimated to total at least $13.4 billion in the U.S. and $1.6 billion in Canada. The study also found that the majority of participants living with an IRD reported their well-being was negatively impacted due to having an IRD.
“Through early detection, specifically through genetic testing, and treatment, severe vision loss and blindness from Inherited Retinal Diseases can be avoided in many cases,” said Jeff Todd, president and CEO of Prevent Blindness. “By educating the public on the many resources that are available, we can work together to save sight from IRDs.”
For more information on IRDs and genetic testing for vision issues, call Prevent Blindness at (800) 331-2020 or visit For a listing of vision care financial assistance programs in English or Spanish, visit