Progeroid features-hepatocellular carcinoma predisposition syndrome

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:435953OMIM:616200C22.0
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

Progeroid features-hepatocellular carcinoma predisposition syndrome is an extremely rare genetic condition that combines signs of premature aging (called progeroid features) with a significantly increased risk of developing liver cancer, specifically hepatocellular carcinoma. This syndrome is caused by mutations in the RECQL4 gene or related DNA repair genes that play a critical role in maintaining the stability of our genetic material. When these genes do not work properly, cells age faster than normal and are more prone to becoming cancerous. Patients with this condition may show signs of early aging such as thin or wrinkled skin, hair loss or thinning, short stature, and skeletal abnormalities. The most serious concern is the predisposition to hepatocellular carcinoma, which is a type of primary liver cancer that can develop at an unusually young age compared to the general population. Other features may include growth delays, skin changes, and problems with bone development. Because this syndrome is so rare, there is no established cure. Treatment focuses on regular cancer surveillance, particularly liver imaging and blood tests to detect liver cancer as early as possible. Management of progeroid symptoms is supportive, addressing individual problems as they arise. Early diagnosis through genetic testing is important so that appropriate screening and monitoring can be started promptly.

Also known as:

Key symptoms:

Signs of premature aging such as wrinkled or thin skinHair loss or thinning hairShort stature or growth delaysSkeletal abnormalities or bone problemsLiver cancer (hepatocellular carcinoma)Skin changes including age spots or discolorationLow body weight or failure to thriveJoint stiffness or limited joint movementFacial features that appear aged beyond actual yearsFatigue or low energy levelsDelayed development in childhood

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 Progeroid features-hepatocellular carcinoma predisposition syndrome.

View clinical trials →

No actively recruiting trials found for Progeroid features-hepatocellular carcinoma predisposition syndrome at this time.

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

Search ClinicalTrials.gov ↗Join the Progeroid features-hepatocellular carcinoma predisposition syndrome community →

No specialists are currently listed for Progeroid features-hepatocellular carcinoma predisposition 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 Progeroid features-hepatocellular carcinoma predisposition syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Progeroid features-hepatocellular carcinoma predisposition syndromeForum →

No community posts yet. Be the first to share your experience with Progeroid features-hepatocellular carcinoma predisposition syndrome.

Start the conversation →

Latest news about Progeroid features-hepatocellular carcinoma predisposition syndrome

No recent news articles for Progeroid features-hepatocellular carcinoma predisposition 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 often should my child have liver cancer screening, and what tests will be used?,What specific genetic mutation was found, and what does it mean for other family members?,Are there any clinical trials or research studies we should consider?,What signs or symptoms should prompt an emergency visit?,How can we best manage the premature aging symptoms day to day?,Should other family members be tested for this genetic change?,What is the long-term outlook, and how can we optimize my child's quality of life?

Common questions about Progeroid features-hepatocellular carcinoma predisposition syndrome

What is Progeroid features-hepatocellular carcinoma predisposition syndrome?

Progeroid features-hepatocellular carcinoma predisposition syndrome is an extremely rare genetic condition that combines signs of premature aging (called progeroid features) with a significantly increased risk of developing liver cancer, specifically hepatocellular carcinoma. This syndrome is caused by mutations in the RECQL4 gene or related DNA repair genes that play a critical role in maintaining the stability of our genetic material. When these genes do not work properly, cells age faster than normal and are more prone to becoming cancerous. Patients with this condition may show signs of e

How is Progeroid features-hepatocellular carcinoma predisposition syndrome inherited?

Progeroid features-hepatocellular carcinoma predisposition syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Progeroid features-hepatocellular carcinoma predisposition syndrome typically begin?

Typical onset of Progeroid features-hepatocellular carcinoma predisposition syndrome is childhood. Age of onset can vary across affected individuals.