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.

Highlights:

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

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 35 Stories

Sort by:

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…

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

Adjust the setting of the site for easier reading.

HIGH CONTRAST
Font size
AA
Line height