What is Nephrotic Syndrome?

Nephrotic syndrome is not a specific disease, but rather a descriptive term that describes the set of signs and symptoms that result from selective loss of large amount of protein into the urine due to damage to the kidney’s filtering units (“glomeruli”). The glomeruli filter blood as it passes through the kidneys to separate what the body needs and does not. In nephrotic syndrome, damaged glomerular cells, particularly the podocytes, allow too much protein to leave the bloodstream and spill into the urine. There are many different specific molecular and environmental causes and contributors to nephrotic syndrome. We already know some of them. Our job is to discover all of the causes and contributors of nephrotic syndrome; a precise understanding of this disease will help us take better care of patients with it.

According to the National Institute of Diabetes and Digestive and Kidney Diseases, around 5 in 100,000 children worldwide develop nephrotic syndrome each year

For families with children affected by nephrotic syndrome

Some support & advocacy groups, informational resources, research cohort, and more

NephCure for Rare Kidney Disease is a patient support and advocacy group that seeks to accelerate research for effective treatments of nephrotic syndrome and provide education and support that will improve the lives of those affected with nephrotic syndrome.

NephCure has curated a list of resources to help families better understand living with nephrotic syndrome. Resources include: “Understanding Kidney Disease”, “Nephrotic Syndrome with Children”, “What is Clinical Research”, and “Patient Empowerment.”

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the Nation. They seek to share their research and expertise with families about topics including kidney disease and nephrotic syndrome in children.

NEPTUNE is a research consortium of physician scientists that strives to discover the molecular causes of nephrotic syndrome, how nephrotic syndrome impacts patients and more precise and effective ways to treat the disease. Additionally, NEPTUNE looks to share information with families to better understand nephrotic syndrome and resources available.

CureGN is a multicenter observational cohort study of the following glomerular diseases: Minimal Change Disease (MCD), Focal Segmental Glomerulosclerosis (FSGS), Membranous Nephropathy (MN), and IgA Nephropathy (IgAN and IgAV). They have a large network of clinical sites across the United States, Canada, and Europe. They have a large network of clinical sites across the United States, Canada, and Europe. Hear about a patient’s experience participating in research with CureGN.