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.
IN THE SPOTLIGHT
They let me know what gene [mutation] I had, my resources, and what I could do from here.”
COMMUNITY INSIGHTS
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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.
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).
SOCIAL MEDIA
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Knowledge is power, and the more patients and the medical community know about specific gene mutations, the faster clinical trials for inherited retinal diseases (IRDs) may progress. Hear two experts explain the impact of testing for IRDs. #EyeWant2Know https://bit.ly/3oJSuci
When April Lufriu needed #genetictesting, there weren’t as many resources as there are today. Listen to this week’s episode of the “Eye Know – Do You?” podcast to learn how winning Mrs. World opened doors for April to be an advocate for the inherited retinal disease community. https://bit.ly/3oJSuci
April Lufriu’s family had a history of inherited retinal diseases (IRDs), so when she and her kids began having trouble with their vision, April knew she had to get a #genetictest. In the latest “Eye Know – Do You?” episode, hear about her family’s journey to a genetic diagnosis. https://bit.ly/3oJSuci
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.