Colobomatous macrophthalmia-microcornea syndrome

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:468672OMIM:602499Q15.8
Who is this for?
Show terms as
8Treatment centers

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
Report missing data

Overview

Colobomatous macrophthalmia-microcornea syndrome is an extremely rare eye condition that affects the size and structure of the eyes. In this syndrome, the eyeball itself is larger than normal (a condition called macrophthalmia), while the clear front window of the eye (the cornea) is smaller than expected (called microcornea). Additionally, there are colobomas present, which are gaps or missing pieces in parts of the eye that form during early development in the womb. These colobomas can affect structures like the iris (the colored part of the eye), the retina (the light-sensing layer at the back of the eye), or the optic nerve. The combination of these eye abnormalities can lead to significant vision problems, including reduced visual sharpness, sensitivity to light, and in some cases, more serious vision loss depending on which parts of the eye are affected by the colobomas. The unusual size mismatch between the large eyeball and small cornea can also contribute to other eye complications such as increased eye pressure (glaucoma) or lens problems. Because this condition is so rare, treatment options are mainly supportive and focused on managing symptoms. This may include corrective lenses, treatment for glaucoma if it develops, and surgical interventions for specific complications. Regular monitoring by an eye specialist is essential to catch and address any changes early. There is currently no cure that corrects the underlying structural abnormalities of the eye.

Also known as:

Key symptoms:

Abnormally large eyeballsSmaller than normal corneasGaps or missing tissue in the iris (coloboma)Gaps in the retina or optic nerveReduced vision or blurry eyesightSensitivity to bright lightUnusual appearance of the pupils (keyhole-shaped)Possible increased eye pressure (glaucoma)Possible lens abnormalitiesDifficulty with depth perceptionPossible nystagmus (involuntary eye movements)

Inheritance

Autosomal dominant

Passed on from just one parent; each child has about a 50% chance of inheriting it

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Colobomatous macrophthalmia-microcornea syndrome.

View clinical trials →

No actively recruiting trials found for Colobomatous macrophthalmia-microcornea syndrome at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Colobomatous macrophthalmia-microcornea syndrome community →

No specialists are currently listed for Colobomatous macrophthalmia-microcornea syndrome.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Colobomatous macrophthalmia-microcornea syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Colobomatous macrophthalmia-microcornea syndromeForum →

No community posts yet. Be the first to share your experience with Colobomatous macrophthalmia-microcornea syndrome.

Start the conversation →

Latest news about Colobomatous macrophthalmia-microcornea syndrome

No recent news articles for Colobomatous macrophthalmia-microcornea syndrome.

Follow this condition to be notified when news becomes available.

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.How severe are the colobomas, and which parts of my child's eyes are affected?,What is the current level of vision, and how might it change over time?,Is there a risk of glaucoma, and how often should eye pressure be checked?,Should we pursue genetic testing, and what might it tell us?,What low vision aids or therapies would be most helpful right now?,Are there any activities or situations we should avoid to protect the eyes?,How often should follow-up eye exams be scheduled?

Common questions about Colobomatous macrophthalmia-microcornea syndrome

What is Colobomatous macrophthalmia-microcornea syndrome?

Colobomatous macrophthalmia-microcornea syndrome is an extremely rare eye condition that affects the size and structure of the eyes. In this syndrome, the eyeball itself is larger than normal (a condition called macrophthalmia), while the clear front window of the eye (the cornea) is smaller than expected (called microcornea). Additionally, there are colobomas present, which are gaps or missing pieces in parts of the eye that form during early development in the womb. These colobomas can affect structures like the iris (the colored part of the eye), the retina (the light-sensing layer at the b

How is Colobomatous macrophthalmia-microcornea syndrome inherited?

Colobomatous macrophthalmia-microcornea syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Colobomatous macrophthalmia-microcornea syndrome typically begin?

Typical onset of Colobomatous macrophthalmia-microcornea syndrome is neonatal. Age of onset can vary across affected individuals.