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All Diseases > Alport syndrome
Alternative Names: Alport syndrome, X-linked; Congenital hereditary hematuria; Hemorrhagic familial nephritis; Hemorrhagic hereditary nephritis
Disease Category: Nephrotic Syndrome
A group of rare, genetic kidney disorders characterized by progressive kidney disease, inner ear abnormalities, and eye abnormalities. Symptoms include hematuria (blood in urine), proteinuria (high levels of protein in urine), hearing loss, anterior lenticonus (misshapen eye lenses), abnormal coloration of the retina, and progressive loss of kidney function.
Research groups studying this disease
Nephrotic Syndrome Study Network (NEPTUNE)View Disease Definition
6801: The Nephrotic Syndrome Study Network (NEPTUNE) Longitudinal Cohort
NEPTUNE is a study network to improve the identification and management of patients with Nephrotic Syndrome (NS) from Minimal Change Disease (MCD), Focal and Segmental Glomerulosclerosis (FSGS), and Membranous Nephropathy (MN). NEPTUNE includes study sites located at universities and medical facilities across North America and brings together patients, patient advocates, doctors and scientists working together to find better treatments for NS. The network allows experts from many areas to share research information to fast-track results that lead to new discoveries.
Alport Syndrome Foundation
An organization led by and dedicated to the Alport community of patients and families.