Overview
Primary membranoproliferative glomerulonephritis (MPGN) is a rare kidney disease in which the immune system mistakenly attacks the tiny filtering units inside the kidneys, called glomeruli. This causes inflammation and a buildup of abnormal tissue that makes it harder for the kidneys to do their job of cleaning the blood and removing waste. The disease is also sometimes called mesangiocapillary glomerulonephritis. There are different types of primary MPGN, classified by what is seen under a microscope and by which part of the immune system is involved — mainly the complement system, which is a group of proteins that normally help fight infection. The kidneys play a vital role in filtering blood, controlling blood pressure, and balancing fluids and minerals in the body. When MPGN damages the glomeruli, protein and blood can leak into the urine, and waste products can build up in the blood. Over time, this can lead to serious kidney damage or even kidney failure. Common symptoms include swelling in the legs and face, foamy or bloody urine, high blood pressure, and fatigue. Treatment depends on the underlying cause and how severe the disease is. Some people are managed with blood pressure medications, drugs to reduce protein loss, and immunosuppressive medicines that calm the immune system. In cases linked to complement system problems, newer targeted therapies are being studied. The goal of treatment is to slow kidney damage and protect kidney function for as long as possible.
Also known as:
Key symptoms:
Swelling in the legs, ankles, feet, or around the eyes (edema)Foamy or frothy urine due to protein leaking into the urineBlood in the urine, making it look pink, red, or cola-coloredHigh blood pressureFatigue and low energyDecreased amount of urineNausea or loss of appetiteHeadachesWeight gain from fluid retentionFrequent infections due to loss of immune proteins in urine
Clinical phenotype terms (16)— hover any for plain English
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
2 eventsNovartis Pharmaceuticals — PHASE3
Leiden University Medical Center — PHASE3
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Primary membranoproliferative glomerulonephritis.
1 clinical trialare 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 Primary membranoproliferative glomerulonephritis.
Community
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Start the conversation →Latest news about Primary membranoproliferative glomerulonephritis
Disease timeline:
New recruiting trial: Study of Efficacy and Safety of Iptacopan in Participants With IC-MPGN
A new clinical trial is recruiting patients for Primary membranoproliferative 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 type of MPGN do I have, and is it driven by the immune system or the complement system?,Should I have genetic testing to look for complement gene mutations?,What is my current kidney function, and how quickly might it change?,Which medications do you recommend for me, and what are the risks and benefits?,Are there any clinical trials I might be eligible for?,What diet and lifestyle changes should I make to protect my kidneys?,What signs should prompt me to go to the emergency room right away?
Common questions about Primary membranoproliferative glomerulonephritis
What is Primary membranoproliferative glomerulonephritis?
Primary membranoproliferative glomerulonephritis (MPGN) is a rare kidney disease in which the immune system mistakenly attacks the tiny filtering units inside the kidneys, called glomeruli. This causes inflammation and a buildup of abnormal tissue that makes it harder for the kidneys to do their job of cleaning the blood and removing waste. The disease is also sometimes called mesangiocapillary glomerulonephritis. There are different types of primary MPGN, classified by what is seen under a microscope and by which part of the immune system is involved — mainly the complement system, which is a
Are there clinical trials for Primary membranoproliferative glomerulonephritis?
Yes — 1 recruiting clinical trial is currently listed for Primary membranoproliferative glomerulonephritis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Primary membranoproliferative glomerulonephritis?
6 specialists and care centers treating Primary membranoproliferative glomerulonephritis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.