Overview
Systemic disease with glomerulopathy as a major feature (Orphanet code 567554) is a broad category describing a group of rare conditions where the body is affected in multiple ways, with kidney damage — specifically to the tiny filtering units called glomeruli — being one of the most important problems. The glomeruli act like tiny sieves in the kidneys, cleaning the blood. When they are damaged, the kidneys cannot filter waste properly, which can lead to protein leaking into the urine, swelling, high blood pressure, and eventually kidney failure. Because this is a category of diseases rather than a single condition, the exact symptoms, causes, and severity can vary widely from person to person. Some people may also experience problems with other organs such as the eyes, ears, skin, liver, or nervous system, depending on the specific underlying disease. Common signs include foamy or bubbly urine (from protein loss), puffiness around the eyes or ankles, fatigue, and reduced kidney function. Treatment depends on the specific diagnosis within this category. It may include medications to protect the kidneys, control blood pressure, reduce inflammation, or address the root cause. Some conditions have targeted therapies, while others are managed with supportive care. Early diagnosis and specialist follow-up are very important to slow kidney damage and protect overall health.
Key symptoms:
Foamy or bubbly urine due to protein leaking from the kidneysSwelling in the legs, ankles, feet, or around the eyesHigh blood pressureFatigue and low energyReduced or dark-colored urineBlood in the urine (urine may look pink or brown)Unexplained weight gain from fluid buildupDecreased kidney function shown on blood testsNausea or loss of appetiteProblems with other organs such as eyes, ears, or skin (depending on the specific condition)
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Systemic disease with glomerulopathy as a major feature.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Systemic disease with glomerulopathy as a major feature at this time.
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Specialists
View all specialists →No specialists are currently listed for 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 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 diagnosis causing my kidney disease, and is genetic testing recommended for me or my family?,How much kidney function do I currently have, and how quickly might it change?,What medications are recommended, and what are the main side effects I should watch for?,Are there dietary changes I should make to protect my kidneys?,Should other family members be tested for a similar condition?,What symptoms should prompt me to go to the emergency room?,Are there any clinical trials or new treatments I might be eligible for?
Common questions about Systemic disease with glomerulopathy as a major feature
What is Systemic disease with glomerulopathy as a major feature?
Systemic disease with glomerulopathy as a major feature (Orphanet code 567554) is a broad category describing a group of rare conditions where the body is affected in multiple ways, with kidney damage — specifically to the tiny filtering units called glomeruli — being one of the most important problems. The glomeruli act like tiny sieves in the kidneys, cleaning the blood. When they are damaged, the kidneys cannot filter waste properly, which can lead to protein leaking into the urine, swelling, high blood pressure, and eventually kidney failure. Because this is a category of diseases rather