Community stories

A shared vision

Finding support within the IRD community

Once you have declared #EyeWant2Know 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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By the time Anastasia Pagonis was 14, she was legally blind and deeply depressed. A swim coach who agreed to train “the blind girl” changed her life, resulting in a ticket to the 2021 Paralympics.

Introducing Anastasia Pagonis.

Read her story

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

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Stay in your lane, Pagonis

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

Renowned geneticist, Stephen Daiger, Ph.D., makes the case for genetic testing

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

Genetic testing: Uncovering the mystery of vision loss

Landing the job with vision loss

Eye Want 2 Know…

How to access new stories as they become available!

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