Overview
Non-genetic systemic disease with glomerulopathy as a major feature is a broad category of conditions where a disease affecting the whole body — not caused by a gene mutation you were born with — also seriously damages the filtering units of the kidneys, called glomeruli. The glomeruli are tiny structures that clean your blood, and when they are harmed, the kidneys can no longer do their job properly. This category includes conditions like lupus nephritis (where the immune system attacks the kidneys), diabetic nephropathy (kidney damage from long-standing diabetes), amyloidosis (where abnormal proteins build up in the kidneys), and kidney damage from infections or certain cancers. Because the underlying cause varies widely, symptoms can differ from person to person. Common signs include swelling in the legs and face, foamy or bloody urine, high blood pressure, and fatigue. Over time, kidney function may decline, sometimes leading to chronic kidney disease or kidney failure. Treatment depends on the root cause. For example, lupus-related kidney disease may be treated with immune-suppressing medicines, while diabetic kidney disease is managed by controlling blood sugar and blood pressure. Some patients may eventually need dialysis or a kidney transplant. Early diagnosis and treatment are key to protecting kidney function for as long as possible.
Key symptoms:
Swelling in the legs, ankles, feet, or around the eyesFoamy or frothy urine (a sign of protein leaking into urine)Blood in the urine, making it look pink, red, or brownHigh blood pressureFatigue and low energyDecreased amount of urineNausea or loss of appetiteDifficulty concentrating or feeling mentally foggyUnexplained weight gain from fluid buildupShortness of breath if fluid builds up in the lungs
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
7 eventsMediar Therapeutics — PHASE1
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) — PHASE2
Regeneron Pharmaceuticals — PHASE2
Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico
Chinese PLA General Hospital — PHASE4
Sohag University — NA
Shoichi Maruyama MD PhD — PHASE3
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Non-genetic systemic disease with glomerulopathy as a major feature.
3 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Specialists
View all specialists →No specialists are currently listed for Non-genetic systemic disease with glomerulopathy as a major feature.
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 Non-genetic systemic disease with glomerulopathy as a major feature.
Community
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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 the specific cause of my kidney damage, and how does that affect my treatment plan?,How much kidney function do I have right now, and how quickly might it decline?,What medications will I need, and what are the main side effects I should watch for?,Are there dietary changes I need to make to protect my kidneys?,What warning signs should prompt me to call you or go to the emergency room?,Is there a clinical trial or newer treatment I might be eligible for?,At what point would I need to consider dialysis or a kidney transplant, and how do I prepare for that?
Common questions about Non-genetic systemic disease with glomerulopathy as a major feature
What is Non-genetic systemic disease with glomerulopathy as a major feature?
Non-genetic systemic disease with glomerulopathy as a major feature is a broad category of conditions where a disease affecting the whole body — not caused by a gene mutation you were born with — also seriously damages the filtering units of the kidneys, called glomeruli. The glomeruli are tiny structures that clean your blood, and when they are harmed, the kidneys can no longer do their job properly. This category includes conditions like lupus nephritis (where the immune system attacks the kidneys), diabetic nephropathy (kidney damage from long-standing diabetes), amyloidosis (where abnormal
How is Non-genetic systemic disease with glomerulopathy as a major feature inherited?
Non-genetic systemic disease with glomerulopathy as a major feature follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Non-genetic systemic disease with glomerulopathy as a major feature?
Yes — 3 recruiting clinical trials are currently listed for Non-genetic systemic disease with glomerulopathy as a major feature on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.