Community stories

A shared vision

Finding support within the IRD community

Once you have declared “Eye Want 2 Know” and have learned more about your specific inherited retinal disease (IRD) through genetic testing, you can connect with people in the larger IRD community who may be having experiences similar to yours. Look here for support and resources.


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Families, specialists, and advocates share stories and advice about living with IRDs and the power of a genetic diagnosis

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Love without sight: A Marine with RP has a new best friend

Stay in your lane, Pagonis

Taking the mystery out of genetic testing

Your vision-loss journey: a team of specialists may be able to help

Considering genetic testing? Emily Place is an expert with answers to your questions

Connecting you to low-vision services: Joseph Hall, Sr. and The Chicago Lighthouse

Eye Want 2 Know…

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