Are you looking for a retina specialist?
The American Society of Retinal Specialists provides a physician locator to help you find a retina specialist.
Anyone with an inherited retinal disease (IRD) should consider genetic testing. Genetic testing may be able to identify the mutated gene or genes responsible for your vision loss. Armed with this important information, you and your doctor can determine the best course of action for your disease and discuss whether clinical research might apply to you.
If you were tested a few years ago and you didn’t receive a conclusive result—or received a negative one—think about getting tested again. Genetic tests have improved, more details about your specific genetic variations or mutations may be revealed, research is advancing, and a person may learn more from a newer test.
When you identify and understand the gene mutations responsible for vision loss, you may open new possibilities for yourself and your family. There are more than 300 genes known to cause IRDs, and the availability of genetic testing has opened doors and brought information and clarity to many living with one of these rare eye diseases. Today there are approximately 100 recruiting, enrolling, or active clinical studies for IRDs on ClinicalTrials.gov, the national resource housing information on all clinical studies across the country. The more patients and the medical community know about specific gene mutations, the faster clinical trials may progress.
Because of this, everyone with an IRD or suspected IRD should pursue genetic testing. Identifying and understanding the changes in your genes (mutations) that are responsible for vision loss is the first step in opening new possibilities for yourself and your family.