Prevent Blindness has designated May as its third annual 'Inherited Retinal Disease (IRD) and Genetic Testing Month' to raise awareness about various forms of IRDs, including Stargardt Disease, and the importance of genetic testing. The organization offers a wealth of free, expert-approved resources, including webpages, patient and expert videos, a new podcast episode, social media graphics, and fact sheets in English and Spanish. The goal is to educate patients and healthcare allies on IRDs and the potential for sight-saving treatments.
IRDs are a group of diseases affecting the retina, the layer of cells at the back of the eyeball that converts light into nerve signals. Types of IRDs include Achromatopsia, Choroideremia, Cone-rod Dystrophy, Leber Congenital Amaurosis, Retinitis Pigmentosa (RP), and Stargardt Disease. Genetic testing is crucial for early identification and diagnosis, potentially leading to clinical trials for sight-saving therapies.
Prevent Blindness emphasizes the importance of accessing eyecare and genetic testing to save sight and provide critical information to families. They have designated the third week of May as Stargardt Disease Week, offering dedicated resources and a new patient video featuring Havah Fleisner, a 17-year-old who advocates for those living with IRDs. The organization also highlights promising research on new sight-saving treatments and therapies.
In addition to the new patient video, Prevent Blindness provides a range of educational resources, including videos with experts like Elias Traboulsi, MD, MEd, and Alina V. Dumitrescu, MD, as well as videos featuring participants in the Prevent Blindness ASPECT Patient Engagement Program. These resources aim to empower individuals and families affected by IRDs and promote the importance of genetic testing and early intervention.
Prevent Blindness, supported by Gold and Silver sponsors, is committed to preserving sight and raising awareness about eye health. By offering a comprehensive suite of resources, they strive to connect individuals to the care and information they need to manage and potentially improve their vision.
