Why this site exists.
People with inherited retinal disease deserve information that is accurate, up to date, and easy to read, even with low vision.
Who we are.
Retina Genetics is created and maintained by Menelik Demissie, Ching Shiuan (Sunny) Fang and Wen Huang, research fellows in inherited retinal disease.
This is an independent educational project. It is not an official website of any university, hospital or company.
How the information is gathered.
- Condition and testing pages are written in plain language from trusted sources, including GeneReviews, the National Eye Institute and the American Academy of Ophthalmology. Sources are listed on each page.
- Clinical trial listings are updated automatically every day from ClinicalTrials.gov. We do not run, recruit for, or endorse any study.
- Medical content is reviewed by an ophthalmologist before publication. Each page shows when it was last reviewed.
Accessibility.
Every page has text size controls, a high contrast mode and a read-aloud button. The site uses the Atkinson Hyperlegible typeface, developed by the Braille Institute for readers with low vision. If something is hard to read or use, please tell us so we can fix it.
Medical disclaimer.
The information on this site is for general education only. It is not medical advice and does not replace care from your own doctor, eye specialist or genetic counselor. Never ignore professional advice or delay seeking it because of something you read here.
Contact.
Questions, corrections or ideas for the site: contact [at] retinagenetics [dot] org
Please do not send medical records, test results or other personal health information by email. For questions about your own eyes or results, contact your eye doctor or genetic counselor.