Prevent Blindness has designated May as the third annual Inherited Retinal Disease (IRD) and Genetic Testing Month, expanding its library of free education resources aimed at supporting education and referral conversations around inherited retinal conditions and genetic testing.
The initiative provides eyecare professionals with a suite of downloadable materials they can share with their patients, including updated fact sheets, social media graphics, expert and patient video content, and a new podcast episode. Resources are available in both English and Spanish and are intended to support patient understanding and engagement around inherited retinal conditions and the role of genetic testing in diagnosis and care planning.
IRDs—such as Stargardt disease, retinitis pigmentosa, and cone-rod dystrophy—are a group of genetically driven retinal conditions that affect visual function through degeneration of retinal cells, as described in clinical references such as the Cleveland Clinic. Prevent Blindness emphasizes that genetic testing can assist in confirming diagnoses, informing management decisions, and identifying eligibility for emerging clinical trials.
A key focus of this year’s campaign is Stargardt Disease Week, which will be observed May 18 to 24 and includes newly released educational content tailored for patient communication. New additions include a patient-focused video featuring 17-year-old advocate Havah Fleisner, who discusses living with legal blindness and her public advocacy platform, as well as a feature on Emmy Award-winning writer and performer Ellen Gould in the organization’s Focus on Eye Health Podcast. Gould discusses her experience with Stargardt disease and her creative work that reflects her vision loss journey.
Additional Prevent Blindness IRD videos include:
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“Stargardt Disease,” with Elias Traboulsi, MD, MEd, pediatric ophthalmologist and geneticist, department of ophthalmology, Cleveland Clinic.
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“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.
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RP videos featuring Prevent Blindness ASPECT Patient Engagement Program participants, including Mara Hutchinson, Roshundra Holt, Brenda Niccum, and Kim Owens.
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“Cone Dystrophy” with Prevent Blindness ASPECT Patient Engagement Program participant, Mariagrazia Buttitta.
Prevent Blindness positions the campaign as a ready-to-use educational support tool for ECPs who are looking to reinforce patient counseling, facilitate discussions around genetic testing, and connect patients with credible, accessible learning materials. Full resources are available through the organization’s IRD and Stargardt disease webpages, along with information on financial assistance programs for vision care. OM