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Genetic testing offers new insights to people living with an inherited retinal disease (IRD)

Welcome to Eye Want 2 Know®, a resource devoted to understanding the genetic causes of inherited retinal diseases (IRDs). Here we feature voices from the IRD community to help others become more empowered to take informed action. Let your voice be heard: declare “Eye Want 2 Know” and speak to your healthcare professional (HCP) today about genetic testing for you or a family member.

Eye Want 2 Know…

Why I need genetic testing for my IRD

Get the facts

Eye Want 2 Know…

How to get a genetic test for my IRD

Get tested

IN THE SPOTLIGHT

They let me know what gene [mutation] I had, my resources, and what I could do from here.”

– Danelle Umstead, Paralympic alpine skier who is living with an IRD

Hear Danelle’s story

COMMUNITY INSIGHTS

IconRead Ed’s Story

One family shares how getting genetic testing has had a cross-generational impact.

IconWatch Dr. Dawn DeCarlo

Dr. Dawn DeCarlo explains how “knowledge is power” for people with IRDs.

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A teenager and his mom share how a confirmed IRD diagnosis changed his life.

FACT OR FICTION?

Providing a genetic sample is a long, complicated process.

FactFiction

FICTION!

Providing a sample for a genetic test is straightforward. Your HCP will collect a cheek (buccal) swab, saliva, or blood sample by the same process as any other swab, saliva, or blood draw. After that, you will be able to discuss your test results with your genetic counselor and ophthalmologist.

Read about the genetic testing process

Choose an HCP discussion guide tailored for you

Select and download a discussion guide to get the most from your conversations with healthcare professionals (HCPs).

Choose your guide

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SOCIAL MEDIA

Connect and share on social media #EyeWant2Know

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Stay connected to families, specialists, and advocates who share their insights

  • Get updates about IRD testing options.
  • Hear the IRD community talk about their experiences.
  • Benefit from a supportive community.

Stay informed

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