Overview
Familial exudative vitreoretinopathy, often called FEVR, is a rare inherited eye condition that affects the development of blood vessels in the retina — the light-sensitive tissue at the back of the eye. In FEVR, the blood vessels that normally grow to cover the entire retina during fetal development fail to reach the outer edges. This incomplete blood vessel growth can lead to a range of vision problems, from very mild cases with no noticeable symptoms to severe cases with significant vision loss. The severity of FEVR varies widely, even among members of the same family. In mild cases, a person may have no symptoms and the condition is only found during a detailed eye exam. In more severe cases, the abnormal blood vessels can leak fluid (exudation), form scar tissue, and pull on the retina, potentially causing retinal folds or retinal detachment. Some patients may also develop abnormal new blood vessel growth (neovascularization), bleeding inside the eye (vitreous hemorrhage), or cataracts. Treatment depends on the severity. Mild cases may only need regular monitoring. More advanced cases may require laser therapy to seal leaking blood vessels, cryotherapy (freezing treatment), or surgery to repair retinal detachment. Early detection and treatment are important to preserve as much vision as possible. FEVR is a lifelong condition, and regular eye exams are essential because the disease can progress over time, even in adulthood.
Also known as:
Key symptoms:
Reduced or blurry visionVision loss in one or both eyesRetinal detachmentAbnormal blood vessel growth in the retinaLeaking fluid from retinal blood vesselsBleeding inside the eyeWhite pupil reflex (leukocoria)Crossed eyes or misaligned eyes (strabismus)Retinal folds or dragging of the retinaCataractsPeripheral vision lossFloaters in the visionDifference in vision between the two eyes
Clinical phenotype terms (27)— hover any for plain English
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Familial exudative vitreoretinopathy.
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Specialists
View all specialists →No specialists are currently listed for Familial exudative vitreoretinopathy.
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 Familial exudative vitreoretinopathy.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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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.How severe is the FEVR in each of my eyes, and what stage is it at?,Do I need treatment now, or can we monitor for now?,How often should I have eye exams to check for progression?,Should my family members be screened, and if so, what tests do they need?,Would genetic testing help us understand the inheritance pattern in our family?,What signs or symptoms should prompt me to seek emergency eye care?,Are there any activities or situations I should avoid to protect my vision?
Common questions about Familial exudative vitreoretinopathy
What is Familial exudative vitreoretinopathy?
Familial exudative vitreoretinopathy, often called FEVR, is a rare inherited eye condition that affects the development of blood vessels in the retina — the light-sensitive tissue at the back of the eye. In FEVR, the blood vessels that normally grow to cover the entire retina during fetal development fail to reach the outer edges. This incomplete blood vessel growth can lead to a range of vision problems, from very mild cases with no noticeable symptoms to severe cases with significant vision loss. The severity of FEVR varies widely, even among members of the same family. In mild cases, a per