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For healthcare providers
For people living with an IRD
EYES ON EMPOWERMENT: SUPPORT AND EDUCATION
Lisa, living with an IRD
Connect with communities
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
About eye specialists and genetic counselors
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Real patient stories about living with an IRD
Genetic testing is empowerment…being able to get in touch with that, being on the map scientifically so that you have that information, and you can make informed choices.
– 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
Technology and support resources for people with vision loss
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.
Genetic testing guide
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.
How do inherited retinal diseases happen?
Genetic counselor Elena breaks down what genes are and how gene variants can impact our vision.
How are retinal diseases inherited?
Narrated by genetic counselor Elena, this animated video brings to life 3 ways inherited retinal diseases can occur.
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