Dermochondrocorneal dystrophy

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ORPHA:79149OMIM:221800L98.8
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8Treatment centers

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Overview

Dermochondrocorneal dystrophy, also known as François syndrome, is a very rare inherited condition that affects three main parts of the body: the skin, the cartilage (the firm but flexible tissue in joints and ears), and the corneas (the clear front surface of the eyes). The disease was first described by the Belgian ophthalmologist Jules François in the 1940s, and only a small number of cases have ever been reported worldwide. The condition typically begins in early childhood. Children may develop small firm bumps under the skin, especially on the hands, feet, and ears. The cartilage in the ears and nose can become thickened or misshapen over time. The corneas of the eyes gradually develop clouding, which can lead to reduced vision if not treated. Because this disease is so rare, treatment is mostly focused on managing individual symptoms. Eye problems may be helped with corneal transplant surgery. Skin and cartilage changes are usually monitored by specialists. There is currently no cure, and care is provided by a team of doctors including eye specialists, skin doctors, and geneticists. Early diagnosis is important so that vision can be protected and other complications can be managed as they arise.

Also known as:

Key symptoms:

Small firm bumps (nodules) under the skin, especially on the hands, feet, and earsThickening or deformity of ear cartilageClouding of the cornea (the clear front part of the eye)Gradual loss of vision due to corneal changesThickening of the skin in affected areasMisshapen or enlarged nose cartilageJoint stiffness in some casesSensitivity to light due to eye involvement

Clinical phenotype terms (7)— hover any for plain English
XanthomatosisHP:0000991
Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Dermochondrocorneal dystrophy.

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No actively recruiting trials found for Dermochondrocorneal dystrophy at this time.

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

Search ClinicalTrials.gov ↗Join the Dermochondrocorneal dystrophy community →

No specialists are currently listed for Dermochondrocorneal dystrophy.

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 Dermochondrocorneal dystrophy.

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Community

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Latest news about Dermochondrocorneal dystrophy

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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.What specialists should be part of my care team, and how often should I see each one?,Should I have genetic testing, and what type would be most useful for my family?,How quickly might my vision change, and when would a corneal transplant be recommended?,Are there any clinical trials or research studies I could participate in?,What signs should prompt me to seek urgent medical attention?,How will this condition affect my child's schooling and daily activities?,Are other family members at risk, and should they be tested?

Common questions about Dermochondrocorneal dystrophy

What is Dermochondrocorneal dystrophy?

Dermochondrocorneal dystrophy, also known as François syndrome, is a very rare inherited condition that affects three main parts of the body: the skin, the cartilage (the firm but flexible tissue in joints and ears), and the corneas (the clear front surface of the eyes). The disease was first described by the Belgian ophthalmologist Jules François in the 1940s, and only a small number of cases have ever been reported worldwide. The condition typically begins in early childhood. Children may develop small firm bumps under the skin, especially on the hands, feet, and ears. The cartilage in the

How is Dermochondrocorneal dystrophy inherited?

Dermochondrocorneal dystrophy follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Dermochondrocorneal dystrophy typically begin?

Typical onset of Dermochondrocorneal dystrophy is childhood. Age of onset can vary across affected individuals.