The conditions vary, but those with IRDs may face many similar challenges, including night blindness (nyctalopia), declining vision, or blindness at birth.
Thanks to renewed focus, retinal gene therapy research is showing exciting potential. Meet some of the field’s pioneering researchers and get a primer on the science.
Science can now decipher which gene is responsible for causing a number of IRDs. Here’s a simple overview to help you understand the basics of the genetic testing process.
Finally. Help with genetic testing.
Spark Therapeutics now offers a free gene testing initiative, designed to identify the genetic mutation responsible for certain inherited retinal diseases. Find out if you may be eligible. Participation in the initiative is subject to the terms and conditions of the initiative.
Braille might help when reading a book, but it won’t help you read a room! Two moms and a teen share tips on how they cope—or help someone else cope—when somebody in the family has an inherited retinal disease (IRD). Watch video
We are constantly connecting with folks in the IRD community to bring new stories to aSharedVision. Check out the latest additions.
While the science of genetics might not actually be rocket science, it’s just as complex. We checked in with a genetic counselor, and asked her to explain how genes, DNA and proteins create the “blueprint of you.” Read more
Here’s the story of Janet LaBreck, who was one of four siblings born with retinitis pigmentosa. Janet rose above tremendous physical and financial limitations to eventually become President Obama’s Commissioner of the Rehabilitation Services Administration. Read her story