Overview
Hepatitis delta, also known as hepatitis D or HDV infection, is a liver infection caused by the hepatitis D virus (HDV). What makes this disease unique is that it can only infect people who already have hepatitis B (HBV). The hepatitis D virus is considered a "defective" virus because it needs the hepatitis B virus to survive and multiply in the body. You can get both viruses at the same time (called coinfection) or catch hepatitis D after you already have chronic hepatitis B (called superinfection). Hepatitis delta is considered the most severe form of viral hepatitis. It causes inflammation and damage to the liver that is often more aggressive than hepatitis B alone. Symptoms can include fatigue, nausea, loss of appetite, abdominal pain (especially in the upper right area), yellowing of the skin and eyes (jaundice), dark urine, and joint pain. Many people may not notice symptoms right away, but the disease can silently damage the liver over time. Hepatitis delta significantly increases the risk of developing cirrhosis (scarring of the liver), liver failure, and liver cancer compared to having hepatitis B alone. The disease can progress to cirrhosis much faster — sometimes within just 5 to 10 years. Treatment options have historically been very limited, but a newer medication called bulevirtide (Hepcludex) has been approved in Europe for the treatment of chronic hepatitis D. Pegylated interferon alfa has also been used, though it has significant side effects and limited success rates. Research into new therapies is ongoing and represents an area of great need for patients.
Also known as:
Key symptoms:
Fatigue and feeling very tiredYellowing of the skin and eyes (jaundice)Dark-colored urinePale or clay-colored stoolsNausea and vomitingLoss of appetitePain in the upper right side of the abdomenJoint painUnexplained weight lossSwelling of the abdomen from fluid buildup (ascites)Easy bruising or bleedingConfusion or difficulty thinking clearly (in advanced disease)Itchy skinFever
Clinical phenotype terms (18)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
10 eventsShanghai HEP Pharmaceutical Co., Ltd. — PHASE3
Huahui Health — PHASE3
Mirum Pharmaceuticals, Inc. — PHASE2, PHASE3
University of Rome Tor Vergata
Research Center of Periodontal-Systemic Interactions
ANRS, Emerging Infectious Diseases
Mirum Pharmaceuticals, Inc. — PHASE3
FROM- Fondazione per la Ricerca Ospedale di Bergamo- ETS
Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Hospices Civils de Lyon — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableHepaGam B
treatment of household exposure to persons with acute HBV infection in infants less than 12 months old whose mother or primary caregiver is positive for HBsAg, and other household contacts with an ide…
treatment of household exposure to persons with acute HBV infection in infants less than 12 months old whose mother or primary caregiver is positive for HBsAg, and other household contacts with an identifiable blood exposure to the index patient
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
Financial Resources
2 resourcesOcuflox Ophthalmic Solution
Allergan, Inc.
Ocuflox Ophthalmic Solution — Contact Allergan, Inc.
Gamunex-C
Grifols Therapeutics, Inc.
Gamunex-C — Contact Grifols Therapeutics, Inc.
Travel Grants
No travel grants are currently matched to Hepatitis delta.
Community
No community posts yet. Be the first to share your experience with Hepatitis delta.
Start the conversation →Latest news about Hepatitis delta
Disease timeline:
New recruiting trial: ePro Diary - HDV ( MACROLIVER )
A new clinical trial is recruiting patients for Hepatitis delta
New recruiting trial: Rapid T-cell Analysis Test in Patients With Chronic HBV and HBV/HDV Disease
A new clinical trial is recruiting patients for Hepatitis delta
New recruiting trial: Effect of Hepatic Impairment on the Pharmacokinetics and Safety of VIR-2218 and VIR-3434
A new clinical trial is recruiting patients for Hepatitis delta
New recruiting trial: Thailand HDV Cohort
A new clinical trial is recruiting patients for Hepatitis delta
New recruiting trial: Changes in Bile Acids and Microbiota in Patients With Hepatitis D Treated With Bulvertide
A new clinical trial is recruiting patients for Hepatitis delta
New recruiting trial: Effectiveness and Safety of Bulevirtide (BLV) Therapy in Patients With Chronic Hepatitis Delta (CHD) in Italy (D-SHIELD)
A new clinical trial is recruiting patients for Hepatitis delta
New recruiting trial: Find HDV and Determine Its Status in Turkey
A new clinical trial is recruiting patients for Hepatitis delta
New recruiting trial: Study of GS-4321 in Healthy Participants and Participants With Chronic Hepatitis Delta Virus
A new clinical trial is recruiting patients for Hepatitis delta
New recruiting trial: Effectiveness and Clinical Outcomes of Long-term Bulevirtide Monotherapy in Patients With HDV-related Compensated Cirrhosis
A new clinical trial is recruiting patients for Hepatitis delta
New recruiting trial: D-SOLVE Cohorts (Cohort a and B)
A new clinical trial is recruiting patients for Hepatitis delta
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 advanced is my liver disease, and do I have any signs of cirrhosis?,Am I a candidate for bulevirtide (Hepcludex) or other specific hepatitis D treatments?,How often will I need blood tests and imaging to monitor my liver?,Should my family members be tested for hepatitis B and D?,Are there any medications, supplements, or foods I should avoid?,At what point would I need to be evaluated for a liver transplant?,Are there any clinical trials for new hepatitis D treatments that I could participate in?
Common questions about Hepatitis delta
What is Hepatitis delta?
Hepatitis delta, also known as hepatitis D or HDV infection, is a liver infection caused by the hepatitis D virus (HDV). What makes this disease unique is that it can only infect people who already have hepatitis B (HBV). The hepatitis D virus is considered a "defective" virus because it needs the hepatitis B virus to survive and multiply in the body. You can get both viruses at the same time (called coinfection) or catch hepatitis D after you already have chronic hepatitis B (called superinfection). Hepatitis delta is considered the most severe form of viral hepatitis. It causes inflammation
How is Hepatitis delta inherited?
Hepatitis delta follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Hepatitis delta?
Yes — 20 recruiting clinical trials are currently listed for Hepatitis delta on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Hepatitis delta?
25 specialists and care centers treating Hepatitis delta are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Hepatitis delta?
3 patient support programs are currently tracked on UniteRare for Hepatitis delta. See the treatments and support programs sections for copay assistance, eligibility, and contact details.