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.

Highlights:

  • The power of community—learn about others’ experiences.
  • Sign up below to be notified of new stories.

IN THE SPOTLIGHT

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

Filter
No filters applied
Clear all

Category

IRD types

Showing 6 of 45 Stories

Sort by:

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!

Stay in touch

Did you find this page useful?

YesNo

What did you find most useful? (Optional)

What could be improved? (Optional)

Your feedback will help us to improve this page.

Thank you for your feedback

Stay informed Find a provider
HCPs: Order test

Are you a healthcare professional looking to order a test? Click here

Adjust the setting of the site for easier reading.

HIGH CONTRAST
Font size
AA
Line height