AEVR Announces First Congressional Briefing on Rare Eye Diseases

(Washington, DC) Today, the Alliance for Eye and Vision Research (AEVR) announced its first-ever Congressional Briefing focusing on lesser-known eye diseases that lead to vision loss and blindness. Entitled Rare Eye Diseases: Research Bringing Treatments to Patients, the briefing will feature Ben Shaberman, PhD, Vice President of Science Communications for AEVR Member Foundation Fighting Blindness.  The briefing, per the attached flyer, will be held May 25th, at noon in Rayburn 2060.

While AEVR has held regular Congressional Briefings on well-known blinding eye diseases, such as Glaucoma, Age-related Macular Degeneration (AMD) and Diabetic Retinopathy, this briefing will look at less prevalent diseases that, left un-treated, can lead to severe vision loss and blindness. Retinitis Pigmentosa (RP), for example, is a group of rare eye diseases that affect the retina (the light-sensitive layer of tissue in the back of the eye). RP causes cells in the retina to break down slowly over time, resulting in vision loss. Most adult patients with RP will eventually go blind, and there is currently no treatment for RP.

Graves’ Disease, an immune system disorder that results in the overproduction of thyroid hormones (hyperthyroidism), can have serious effects on the eyes and vision, and is more common in females. Approximately 30% of all patients with Graves’ Disease suffer various ocular symptoms, including bulging eyes, pain or irritation, light sensitivity, and some vision loss.

In addition to Dr. Shaberman’s presentation, the briefing will also feature patients who will share their experiences living with blinding eye diseases.