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.


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


Bradford and Bryan Manning lost their central vision due to Stargardt disease. But that didn’t stop them from pursuing an entrepreneurial dream and getting Ellen DeGeneres—and the world—to back them up.

Introducing Two Blind Brothers.

Read their story

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

No filters applied
Clear all


IRD types

Showing 6 of 44 Stories

Sort by:

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

Then and now: Top assistive technology for the vision-loss community

Eye Want 2 Know…

How to access new stories as they become available!

Stay in touch

Did you find this page useful?


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.

Font size
Line height