Prevent Blindness, a patient advocacy organization dedicated to protecting and preserving eye health, has designated May as its third annual “Inherited Retinal Disease (IRD) and Genetic Testing Month. Prevent Blindness offers a variety of free, expert-approved resources on IRDs, including webpages, patient and expert videos, a new podcast episode, social media graphics, and fact sheets in English and Spanish. Prevent Blindness IRD and Genetic Testing Month and Stargardt Disease Week are supported by Gold Sponsors Belite Bio and BlueRock Therapeutics, and Silver Sponsor Alkeus Pharmaceuticals.
Genetic testing can help doctors identify the disorder early and provide the correct diagnosis and treatment plan. Doctors may also direct patients to participate in clinical trials for access to potentially vision-saving therapies.
“Promising research on new sight-saving treatments and therapies is currently underway to help prevent significant vision loss from several IRDs,” said Jeff Todd, president and CEO of Prevent Blindness. “By accessing eye care and undergoing genetic testing, patients can partner with their health care teams to save their sight and provide critical information to their families.”
New this year, Prevent Blindness is debuting a Stargardt Disease patient video featuring Havah Fleisner, age 17. She competes in pageants and advocates through her platform, “Through Her Eyes: Living Life Legally Blind.” In addition, Emmy Award-winning writer and performer Ellen Gould is featured in the May Prevent Blindness Focus on Eye Health Podcast. Ms. Gould discusses the musical she created about her experiences as a person living with Stargardt Disease, titled “Seeing Stars.”
Additional Prevent Blindness IRD videos include:
- Stargardt Disease with Elias Traboulsi, MD, MEd, Pediatric Ophthalmologist and Geneticist, Department of Ophthalmology, Cleveland Clinic
- 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
- RP videos featuring Prevent Blindness ASPECT Patient Engagement Program participants
- Cone Dystrophy with Prevent Blindness ASPECT Patient Engagement Program participant, Mariagrazia Buttitta
