Lisa, living with an IRD
IRD communities and patient advocacy groups both offer a way to connect people who are living with an IRD. Patient advocacy groups in particular can also provide a variety of support including educational tools, rehab services, and training programs that can help individuals learn new skills to support work, school, and everyday activities.
Clicking on any link below will take you to a third-party website.
Having a diagnosis means you can connect with other people in the community and around the country.
– Ramya, living with an IRD
– Lisa, living with an IRD
My brother and I were tested at 6 and 13. You don't really know too much about genetics at a young age. So when we got tested, it was a little bit of a shock to my parents that we both had it.
– Vinny, living with an IRD
Assistive technology devices and other support resources can enhance the everyday life of people living with an IRD.
Screen Readers
A screen reader is a software program that helps blind or low-vision users read the text displayed on a computer screen and perform more advanced functions in common computer applications.
Voice-Assisted Technology
Voice-assisted technology is everywhere, and it is especially useful for people with vision loss or impairment. From smartphones to smart home devices, this technology has become a powerful tool that helps people living with an IRD better navigate the tasks of daily life.
Your eye specialist along with your genetic counselor will help set expectations about what genetic tests can reveal.
If you do not have any known family history but have been suspected of having an inherited retinal disease, it’s still important to ask your eye specialist about genetic testing or retesting.
Genetic counselor Elena breaks down what genes are and how gene variants can impact our vision.
Narrated by genetic counselor Elena, this animated video brings to life 3 ways inherited retinal diseases can occur.
Don’t miss out on important updates. Keep learning about genetic testing and stay connected to future treatment innovations.
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