Prevent Blindness expands IRD and genetic testing awareness initiative to educate patients on various forms of IRDs, and the importance of genetic testing to confirm diagnosis and possible treatments
Prevent Blindness has designated May as “Inherited Retinal Disease (IRD) Genetic Testing Awareness Month,” expanding its previous IRD and Genetic Testing Awareness Week initiative. The group is providing a variety of tools to promote awareness and education for IRDs and the importance of genetic testing, including a free webinar, expert and patient videos, shareable social media graphics, and fact sheets in English and Spanish. IRD Genetic Testing Awareness Month is supported by funding from Johnson & Johnson, and Spark® Therapeutics.
IRD’s are caused by a change in one or more genes and cannot be prevented, according to Duke Health. These mutations change the structure and function of the retina and cause impaired vision, and in some cases, complete vision loss. Additionally, IRDs can affect individuals of all ages, can progress at different rates, and are rare. Genetic testing is available to identify many gene variants that cause IRDs.
Later in May, Prevent Blindness will establish a dedicated webpage, new fact sheets, an expert video, and resources, to provide education and support for those with Stargardt Disease, made possible with support from Alkeus Pharmaceuticals.
As part of its Focus on Eye Health Expert Series, Prevent Blindness offers the episode, “Inherited Retinal Disorders and Genetic Testing,” with Alina V. Dumitrescu, M.D., 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 include RP patient Brenda Niccum, and cone dystrophy patient Mariagrazia Buttitta, who share their specific vision issues and vision impairment journeys.
Additionally, Johnson & Johnson offers the free EyesOnGenes resource, a comprehensive website for patients and health care providers with information on IRDs, genetic testing benefits, community resources and more. Spark Therapeutics offers the Eye Want 2 Know® educational resource, dedicated to helping patients understand the genetic causes of IRDs and the potential benefits of genetic testing.
“Although there are currently no cures for inherited retinal diseases, vision loss can be lessened in some cases if IRDs are detected and treated early,” said Jeff Todd, president and CEO of Prevent Blindness. “Through genetic testing, improving access to eyecare, and committing to ongoing vision research, we can help save sight for adults and children with IRDs now and into the future.”