Overview
Inherited retinal disorders (IRDs) are a large group of genetic eye conditions that damage the light-sensitive cells at the back of the eye, called the retina. The retina works like the film in a camera — it captures light and sends signals to the brain so you can see. When the retina is damaged by a genetic mutation, vision gradually gets worse over time, and in many cases can lead to severe vision loss or blindness. The Orphanet code 71862 was previously used as a broad, umbrella label for inherited retinal disorders before more specific diagnoses became available. Today, doctors recognize many distinct types of IRDs, including retinitis pigmentosa, Leber congenital amaurosis, Stargardt disease, choroideremia, and cone-rod dystrophy, among others. Each type is caused by mutations in different genes and may affect vision in slightly different ways. Common symptoms include difficulty seeing in dim light or at night, loss of side (peripheral) vision, blurry central vision, and sensitivity to bright light. Some forms begin in childhood, while others appear in adulthood. Treatment options are expanding rapidly, with gene therapy now approved for some specific types. Management focuses on protecting remaining vision, using low-vision aids, and monitoring for changes over time.
Also known as:
Key symptoms:
Difficulty seeing in low light or at night (night blindness)Loss of side (peripheral) vision, sometimes described as tunnel visionBlurry or distorted central visionSensitivity to bright lights or glareColors appearing faded or washed outDifficulty reading or recognizing facesFlashing lights or visual disturbancesGradual worsening of vision over months or yearsDifficulty adjusting when moving between bright and dark environmentsBlind spots in the field of vision
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
10 eventsSheba Medical Center — PHASE1, PHASE2
Octant, Inc. — PHASE1, PHASE2
Zhongshan Ophthalmic Center, Sun Yat-sen University — PHASE3
Shanghai General Hospital, Shanghai Jiao Tong University School of Medicine — EARLY_PHASE1
PYC Therapeutics — PHASE1, PHASE2
University of Rochester — PHASE1
Shanghai General Hospital, Shanghai Jiao Tong University School of Medicine — PHASE1
University Medical Center Goettingen
Ocugen — PHASE3
PYC Therapeutics — PHASE1
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableLUXTURNA
indicated for the treatment of patients with confirmed biallelic RPE65 mutation-associated retinal dystrophy
Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Inherited retinal disorder.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to OBSOLETE: Inherited retinal disorder.
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Which specific type of inherited retinal disorder do I have, and which gene is causing it?,Is there a gene therapy or clinical trial that I might be eligible for?,How quickly is my vision likely to change, and what should I watch for?,Should other family members be tested, and what does this mean for my children?,What low-vision services or rehabilitation programs do you recommend?,Are there any vitamins or lifestyle changes that might help protect my remaining vision?,How often should I come in for monitoring, and what tests will be done?
Common questions about OBSOLETE: Inherited retinal disorder
What is OBSOLETE: Inherited retinal disorder?
Inherited retinal disorders (IRDs) are a large group of genetic eye conditions that damage the light-sensitive cells at the back of the eye, called the retina. The retina works like the film in a camera — it captures light and sends signals to the brain so you can see. When the retina is damaged by a genetic mutation, vision gradually gets worse over time, and in many cases can lead to severe vision loss or blindness. The Orphanet code 71862 was previously used as a broad, umbrella label for inherited retinal disorders before more specific diagnoses became available. Today, doctors recognize
Are there clinical trials for OBSOLETE: Inherited retinal disorder?
Yes — 20 recruiting clinical trials are currently listed for OBSOLETE: Inherited retinal disorder on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.