Understanding Inherited Retinal Diseases

Comprehensive, up-to-date information on {conditionCount === undefined? "": `$ `}IRD conditions and {geneCount === undefined? "": `$ `}associated genes. Empowering patients, families, and researchers with the latest research insights.

Read Luke's story

We just got a diagnosis

A calm place to begin, with the next steps laid out in order.

I'm looking for a clinical trial

Studies for inherited retinal diseases, with phase and enrollment status.

I'm raising a child with an IRD

School, support, and everyday life for parents and caregivers.

I'm a researcher or clinician

Gene profiles with references, linked to the conditions they cause.

Where would you like to start?

Pick the one that sounds most like you.

Know what you're looking for?

The condition that started our race

Featured condition

The featured condition profile isn't available right now.

Bardet-Biedl Syndrome (BBS) is a rare, multisystem genetic disorder characterized by retinal degeneration, obesity, intellectual disability, kidney abnormalities, extra fingers/toes (polydactyly), and hypogonadism. It is a ciliopathy, meaning it results from defects in cilia.

Trials in motion

Active studies for inherited retinal diseases, by how far along they are.

Eye, retina, and related syndrome studies. Source: ClinicalTrials.gov{asOf? `, as of $ `: ""}. For information only; talk with your retina specialist.

No active trial records are available right now.

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Newly diagnosed?

Getting an IRD diagnosis can be overwhelming. Here is the path most families take, one step at a time.

IRD Education Hub

Free resource on inherited retinal diseases and associated genes. Explore conditions, clinical trials, gene therapy, and find specialists.

Current directory coverage

52 Disease Profiles

125 Gene Profiles