Overview
Also known as:
FDA & Trial Timeline
4 eventsChildren's Mercy Hospital Kansas City — PHASE1
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Children's Hospital Medical Center, Cincinnati
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Fontan-associated liver disease.
4 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
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 Fontan-associated liver disease.
Community
No community posts yet. Be the first to share your experience with Fontan-associated liver disease.
Start the conversation →Latest news about Fontan-associated liver disease
Disease timeline:
New recruiting trial: Fontan Associated Liver Disease and the Evaluation of Biomarkers for Disease Severity Assessment
A new clinical trial is recruiting patients for Fontan-associated liver disease
New recruiting trial: IMProving DRug Dosing and Outcomes for Single VEntricle Patients With Fontan Associated Liver Disease
A new clinical trial is recruiting patients for Fontan-associated liver disease
New recruiting trial: Cholate Clearance in Fontan and Heart Failure
A new clinical trial is recruiting patients for Fontan-associated liver disease
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.
Common questions about Fontan-associated liver disease
Are there clinical trials for Fontan-associated liver disease?
Yes — 4 recruiting clinical trials are currently listed for Fontan-associated liver disease on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Fontan-associated liver disease?
22 specialists and care centers treating Fontan-associated liver disease are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.