May 11, 2023 — Prevent Blindness has declared May 15-21 the fourth annual Inherited Retinal Disease (IRD) Genetic Testing Week.
To educate the public and assist eyecare professionals in discussing IRDs with their patients, the nonprofit offers a variety of educational resources on its dedicated web page, including shareable social media graphics and fact sheets in English and Spanish.
On Tuesday, May 16, at 3 p.m. EST, the National Center for Children’s Vision and Eye Health at Prevent Blindness will be hosting a free webinar, “Inherited Retinal Diseases and Children’s Vision and Eye Health: What You Need to Know.” Designed for a wide audience, the webinar will feature panelists Donna Hunt Hodge, MBA, of Janssen Pharmaceutical Companies of Johnson & Johnson; Arlene Drack, M.D., of the University of Iowa’s Department of Ophthalmology and Visual Sciences; Sherry Day, O.D., FAAO, clinical assistant professor at the University of Michigan; Kari Branham, MS, CGC, clinical assistant professor at the University of Michigan; Mariagrazia Buttitta, MA, NCC, patient with cone dystrophy, national certified counselor, author, and mental health and disability advocate; and Allison Galloway, FNP-C, MS, SA, parent of two children with LCA13, a childhood degenerative retinal disease and certified family nurse practitioner, master’s prepared in food and science, and a certified surgery assistant.
In Prevent Blindness’s Focus on Eye Health Expert Series, Alina V. Dumitrescu, M.D., discusses IRDs with Jeff Todd, president and CEO of Prevent Blindness, in the episode, “Inherited Retinal Disorders and Genetic Testing.”
Prevent Blindness’s recently redesigned Living Well with Low Vision site provides a dedicated listing of clinical trials for diseases of the retina for anyone interested in participating. One of the organization’s most visited online resources, the site also offers a variety of free directories, a library of self-help guides, downloadable apps, and relevant news for low vision patients.
IRD Genetic Testing Week is supported by Janssen Pharmaceutical Companies of Johnson & Johnson and Spark Therapeutics. Janssen offers EyesOnGenes, an educational website with information on IRDs, genetic testing benefits, community resources, and more. Spark also offers educational resources on its site, Eye Want 2 Know.
“The many recent advancements in treatment for eye diseases have been truly remarkable,” says Todd. “By providing IRD patients with the resources they need to learn more about their diagnosis, as well as how gene therapy may benefit them, we are working to continue to preserve vision.”