Overview
C3 glomerulonephritis (also called C3 GN) is a rare kidney disease that belongs to a group of conditions known as C3 glomerulopathies. In this disease, a part of the immune system called the complement system becomes overactive. The complement system normally helps fight infections, but when it doesn't work properly, a protein called C3 builds up in the tiny filtering units of the kidneys (called glomeruli). This buildup causes inflammation and damage to the kidneys over time. The most common symptoms include blood in the urine (which may look pink, red, or cola-colored), protein in the urine (which can make it foamy), swelling in the legs, ankles, or around the eyes, and high blood pressure. Some people may feel tired or generally unwell. Over time, if the disease is not managed, it can lead to worsening kidney function and potentially kidney failure. Treatment for C3 glomerulonephritis focuses on slowing down kidney damage and managing symptoms. Doctors may prescribe medications to control blood pressure, reduce protein in the urine, and suppress the overactive immune system. Newer treatments that target the complement system are being studied in clinical trials and show promise. Some patients may eventually need dialysis or a kidney transplant if the disease progresses to kidney failure. Early diagnosis and close monitoring by a kidney specialist are important for the best possible outcomes.
Key symptoms:
Blood in the urine (pink, red, or dark-colored urine)Foamy or bubbly urine from excess proteinSwelling in the legs, ankles, feet, or around the eyesHigh blood pressureFatigue and feeling tiredDecreased urine outputWeight gain from fluid retentionNausea or loss of appetiteHeadaches related to high blood pressureGeneral feeling of being unwellKidney pain or flank discomfort in some cases
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
6 eventsSuzhou Sanegene Bio Inc. — PHASE2
Omeros Corporation — PHASE2
Apellis Pharmaceuticals, Inc. — PHASE3
Apellis Pharmaceuticals, Inc. — PHASE2
Region Skane — PHASE2
Novartis Pharmaceuticals — PHASE3
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for C3 glomerulonephritis.
5 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 C3 glomerulonephritis.
Community
No community posts yet. Be the first to share your experience with C3 glomerulonephritis.
Start the conversation →Latest news about C3 glomerulonephritis
Disease timeline:
New recruiting trial: Safety and Efficacy Study of OMS906 in Patients With C3G and ICGN
A new clinical trial is recruiting patients for C3 glomerulonephritis
New recruiting trial: Long-term Efficacy, Safety and Tolerability of Iptacopan in C3G or IC-MPGN
A new clinical trial is recruiting patients for C3 glomerulonephritis
New recruiting trial: Evaluation of a Renin Inhibitor, Aliskiren, Compared to Enalapril, in C3 Glomerulopathy
A new clinical trial is recruiting patients for C3 glomerulonephritis
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.What is my current level of kidney function, and how quickly is it changing?,Should I have genetic testing to look for a complement gene mutation?,What treatment options are best for my specific situation?,Are there any clinical trials for C3 glomerulonephritis that I might be eligible for?,What dietary changes should I make to protect my kidneys?,If my kidneys fail, what are my options, and what is the risk of the disease coming back after a transplant?,How often should I have blood and urine tests to monitor my condition?
Common questions about C3 glomerulonephritis
What is C3 glomerulonephritis?
C3 glomerulonephritis (also called C3 GN) is a rare kidney disease that belongs to a group of conditions known as C3 glomerulopathies. In this disease, a part of the immune system called the complement system becomes overactive. The complement system normally helps fight infections, but when it doesn't work properly, a protein called C3 builds up in the tiny filtering units of the kidneys (called glomeruli). This buildup causes inflammation and damage to the kidneys over time. The most common symptoms include blood in the urine (which may look pink, red, or cola-colored), protein in the urine
Are there clinical trials for C3 glomerulonephritis?
Yes — 5 recruiting clinical trials are currently listed for C3 glomerulonephritis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat C3 glomerulonephritis?
20 specialists and care centers treating C3 glomerulonephritis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.