Overview
Disorder with multisystemic involvement and glomerulopathy (Orphanet code 567562) is a rare genetic condition that affects multiple organ systems in the body, with a particular focus on the kidneys. The term 'glomerulopathy' refers to damage to the tiny filtering units inside the kidneys called glomeruli. When these filters are damaged, the kidneys cannot properly clean the blood, which can lead to protein leaking into the urine, swelling, and over time, kidney failure. Because this disorder is 'multisystemic,' it does not stop at the kidneys — it can also affect other parts of the body, though the exact combination of symptoms can vary from person to person. This condition is considered ultra-rare, and detailed clinical information is still being gathered by researchers and clinicians worldwide. Because it sits at the intersection of kidney disease and broader systemic illness, patients are typically cared for by a team of specialists. Early recognition of kidney involvement is especially important, as catching and managing kidney disease early can help slow its progression. Treatment is generally focused on managing symptoms and protecting kidney function, as no specific cure is currently available for most patients with this type of condition.
Key symptoms:
Protein in the urine (foamy or bubbly urine)Swelling in the legs, ankles, or around the eyesHigh blood pressureDeclining kidney function over timeFatigue and low energyBlood in the urine (urine may look pink, red, or brown)Involvement of other organ systems beyond the kidneys
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 Disorder with multisystemic involvement and glomerulopathy.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Disorder with multisystemic involvement and glomerulopathy at this time.
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Specialists
View all specialists →No specialists are currently listed for Disorder with multisystemic involvement and glomerulopathy.
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 Disorder with multisystemic involvement and glomerulopathy.
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.Which specific gene or genes might be causing this condition in my case, and should I have genetic testing?,How quickly is my kidney function declining, and what can we do to slow it down?,Which other organs should we be monitoring, and how often?,Are there any clinical trials or research studies I might be eligible to join?,What dietary changes should I make to protect my kidneys?,At what point would dialysis or a kidney transplant be considered, and how do we plan for that?,Should other family members be tested or screened for this condition?
Common questions about Disorder with multisystemic involvement and glomerulopathy
What is Disorder with multisystemic involvement and glomerulopathy?
Disorder with multisystemic involvement and glomerulopathy (Orphanet code 567562) is a rare genetic condition that affects multiple organ systems in the body, with a particular focus on the kidneys. The term 'glomerulopathy' refers to damage to the tiny filtering units inside the kidneys called glomeruli. When these filters are damaged, the kidneys cannot properly clean the blood, which can lead to protein leaking into the urine, swelling, and over time, kidney failure. Because this disorder is 'multisystemic,' it does not stop at the kidneys — it can also affect other parts of the body, thoug