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.
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)
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
2 eventsData 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 →Clinical Trials
View all trials with filters →No actively recruiting trials found for Hepatic cystic hamartoma at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Hepatic cystic hamartoma.
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 Hepatic cystic hamartoma.
Community
No community posts yet. Be the first to share your experience with Hepatic cystic hamartoma.
Start the conversation →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.