Diseases Studied
The Rare Diseases Clinical Research Network is an NIH-funded research network of 20 active consortia or research groups working to advance treatment for diseases that are rare. Use the search tools on this page to find the diseases we currently study. You can reach out to the indicated consortia or research groups for more information on those diseases and studies underway.
This network focuses on clinical research and does not generally support clinical care outside of research activities. To learn about other rare diseases, please visit the Genetic and Rare Diseases Information Center (GARD), which is an NIH program that helps the public find reliable information about rare and genetic diseases. Their staff are specialists. Contact them at 1-888-205-2311 or email GARDinfo@nih.gov.
All Diseases > Focal and Segmental Glomerulosclerosis
Focal and Segmental Glomerulosclerosis (FSGS)
Alternative Names: Focal Nodular Glomerulosclerosis; Focal Glomerular Sclerosis
Disease Category: Nephrotic Syndrome
A kidney disorder characterized by scarring of a limited number of glomeruli (kidney structures responsible for filtering the blood and removing waste in urine). Only portions (segments) of these specific glomeruli are damaged. This particular disorder accounts for a fourth of nephrotic syndrome cases. Symptoms include proteinuria (proteins in the urine), hypoproteinemia (low blood protein levels), high triglyceride (type of fatty substance in the blood) levels, hypercholesterolemia (high blood cholesterol levels), swelling, and advanced (end-stage) kidney disease.
Research groups studying this disease
Recruiting
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.
Halpin Foundation
Seeks to aid the medical community in understanding and overcoming genetic conditions with research grants targeted at kidney disease and autoimmune disease.
NephCure Kidney International
Accelerates research for effective treatments for rare forms of nephrotic syndrome while providing education and support to those affected.