Overview
Retinal capillary malformation, also known as retinal capillary hemangioma or retinal angioma, is a rare condition where abnormal clusters of tiny blood vessels (capillaries) grow in the retina — the light-sensitive layer at the back of the eye. These abnormal blood vessel growths are benign (non-cancerous) tumors, but they can cause serious problems with vision over time. The condition may affect one eye or both eyes, and a person can have one or several of these growths. The most important thing to know is that retinal capillary malformations are strongly linked to a hereditary condition called Von Hippel-Lindau (VHL) disease. In VHL disease, similar abnormal blood vessel growths can also appear in the brain, spine, kidneys, and other organs. Not everyone with a retinal capillary malformation has VHL disease, but all patients should be evaluated for it. Symptoms depend on the size and location of the malformation. Small growths may cause no symptoms at all and are found during a routine eye exam. Larger growths can cause blurry vision, distorted vision, floaters, or even significant vision loss if the retina becomes damaged or detached. Treatment options include laser therapy, cryotherapy (freezing), and other targeted approaches to destroy or shrink the abnormal vessels. Early detection is key to protecting vision.
Also known as:
Key symptoms:
Blurry or distorted visionFloaters (spots or lines drifting across your field of vision)Decreased sharpness of central visionLoss of peripheral (side) visionSudden or gradual vision loss in one eyeSeeing flashes of lightRetinal detachment (the retina pulling away from the back of the eye)No symptoms at all in early or small lesions (found only on eye exam)
Clinical phenotype terms (19)— hover any for plain English
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Retinal capillary malformation.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Retinal capillary malformation at this time.
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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 Retinal capillary malformation.
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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.Do I need to be tested for Von Hippel-Lindau (VHL) disease, and should my family members be tested too?,How large is my retinal malformation, and what is the risk to my vision if it is not treated?,Which treatment option is best for my specific situation, and what are the risks and benefits?,How often do I need to come in for monitoring, and what signs should prompt me to call sooner?,Are there other parts of my body that need to be checked for similar growths?,Is there anything I should avoid doing that could make my condition worse?,Are there any clinical trials or newer treatments I should know about?
Common questions about Retinal capillary malformation
What is Retinal capillary malformation?
Retinal capillary malformation, also known as retinal capillary hemangioma or retinal angioma, is a rare condition where abnormal clusters of tiny blood vessels (capillaries) grow in the retina — the light-sensitive layer at the back of the eye. These abnormal blood vessel growths are benign (non-cancerous) tumors, but they can cause serious problems with vision over time. The condition may affect one eye or both eyes, and a person can have one or several of these growths. The most important thing to know is that retinal capillary malformations are strongly linked to a hereditary condition ca
How is Retinal capillary malformation inherited?
Retinal capillary malformation follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Which specialists treat Retinal capillary malformation?
4 specialists and care centers treating Retinal capillary malformation are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.