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

Love without sight: A Marine with retinitis pigmentosa (RP) has a new best friend

Stay in your lane, Pagonis

Taking the mystery out of genetic testing

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

Genetic testing: Uncovering the mystery of vision loss

Yes, America. Kenadi Dodds has talent.

Parenting children who have vision loss

Owning her vision loss: Rebecca Alexander’s story

Living with vision loss in a sighted world

Dancing in the dark

One woman’s journey

Genetic Testing: A Professional’s Perspective

Eye Want 2 Know…

How to access new stories as they become available!

Stay in touch

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