Newly Diagnosed?

Illustration of the eye cross-section showing the retina at the back of the eye

Newly Diagnosed with an IRD

Just diagnosed with an inherited retinal disease? Start here for clear guidance on next steps, genetic testing, and finding support.

For Patients & Families

Getting an inherited retinal disease diagnosis can be overwhelming. We have created clear, compassionate guides for every condition — written for patients and parents at the moment of diagnosis.

Showing of conditions

Patient Guide

Parent Guide

Genetic Testing Guide

Understand how genetic testing works and what results mean for your family.

Find a Specialist

Connect with expert physicians and research centers specializing in your condition.

Understanding Therapies

Learn about gene therapy, stem cells, and other treatments being developed for IRDs.