Hepatic cystic hamartoma

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ORPHA:386D13.4
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8Treatment centers

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Overview

Hepatic cystic hamartoma, also sometimes called mesenchymal hamartoma of the liver or biliary hamartoma (von Meyenburg complex), is a rare, non-cancerous growth that forms in the liver. It develops when normal liver tissue grows in an unusual, disorganized way, creating one or more fluid-filled sacs (cysts) mixed with fibrous tissue. These growths are benign, meaning they are not cancer, but they can still cause problems depending on their size and location in the liver. Many people with hepatic cystic hamartoma have no symptoms at all, and the condition is often found by accident during an ultrasound or scan done for another reason. When symptoms do occur, they may include abdominal discomfort, a feeling of fullness or pressure in the upper right belly, or a noticeable lump. In rare cases, large growths can press on nearby organs or bile ducts, causing more serious problems. Treatment depends on the size of the hamartoma and whether it is causing symptoms. Small, asymptomatic cases are often just monitored with regular imaging. Larger or symptomatic cases may require surgical removal. The overall outlook for most people is very good, especially when the condition is caught early and managed appropriately.

Also known as:

Key symptoms:

Pain or discomfort in the upper right side of the abdomenA feeling of fullness or bloating in the bellyA noticeable lump or swelling in the abdomenNauseaLoss of appetiteUnexplained weight loss in some casesYellowing of the skin or eyes (jaundice) if bile ducts are affectedFatigue or tirednessAbdominal distension (belly appearing larger than usual)

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

FDA & Trial Timeline

2 events
Mar 2026Ghana MHL Project, Tamale

Yale University — NA

TrialNOT YET RECRUITING
Jun 2023Family Model DSME in FBOs in the RMI

University of Arkansas — NA

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Hepatic cystic hamartoma.

View clinical trials →

No actively recruiting trials found for Hepatic cystic hamartoma at this time.

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

Search ClinicalTrials.gov ↗Join the Hepatic cystic hamartoma community →

No specialists are currently listed for Hepatic cystic hamartoma.

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 Hepatic cystic hamartoma.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Hepatic cystic hamartoma

Disease timeline:

New recruiting trial: Family Model DSME in FBOs in the RMI

A new clinical trial is recruiting patients for Hepatic cystic hamartoma

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 large is my hamartoma, and does it need to be treated right away or can we monitor it?,How often should I have imaging done to check for changes?,What symptoms should prompt me to seek emergency care?,Is surgery the best option for me, and what are the risks?,Is there any chance this could become cancerous over time?,Are there any activity or dietary restrictions I should follow?,Should other family members be screened for this condition?

Common questions about Hepatic cystic hamartoma

What is Hepatic cystic hamartoma?

Hepatic cystic hamartoma, also sometimes called mesenchymal hamartoma of the liver or biliary hamartoma (von Meyenburg complex), is a rare, non-cancerous growth that forms in the liver. It develops when normal liver tissue grows in an unusual, disorganized way, creating one or more fluid-filled sacs (cysts) mixed with fibrous tissue. These growths are benign, meaning they are not cancer, but they can still cause problems depending on their size and location in the liver. Many people with hepatic cystic hamartoma have no symptoms at all, and the condition is often found by accident during an u

How is Hepatic cystic hamartoma inherited?

Hepatic cystic hamartoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.