Do you have a rare kidney disease like FSGS, IgA Nephropathy, or other Nephrotic Syndrome condition? You’ve come to the right place.
Access breakthrough clinical trials, expert care, and one-on-one patient support here.
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The Rare Genomes Project

The Rare Genomes Project

Brief Description

The Rare Genomes Project aims to increase rare and undiagnosed families’ access to genomic research, empowering patients to directly accelerate the pace of rare disease diagnosis. This project was designed to be a direct partnership between researchers and patients, so we can better understand their conditions.

Trial for people with

Rare and genetically undiagnosed conditions

Study Goal

The Rare Genomes Project hopes to enable patients with undiagnosed, suspected genetic conditions to participate in genomic research regardless of where they live, to engage participants as partners in the research process, and to turn genomic data into clinically meaningful answers for families.

What is involved for the Patient?

Patients will complete a health history survey, send a sample of DNA, and talk to their physician and the study team.

About the drug or intervention

Learn more at

  • Study CoordinatorThe Rare Genomes Team
  • Study Coordinator
  • Study Coordinator Phone617-714-7395
    If there is not a site for a clinical trial nearby, you can ask the study team about the possibility of travel reimbursements (i.e., paying you back for your travel costs). Alternatively, you can ask about the possibility of participating from home.
    Frequently Asked Questions

    Nephrotic Syndrome is not a disease itself, but rather a group of signs and symptoms that result from damage in the part of the kidney that filters blood (glomeruli).

    Common symptoms include:

    • Foamy urine (called proteinuria) caused by protein “spilling” into the urine
    • Severe swelling in parts of the body, most noticeably around the eyes, hands, feet, and abdomen (called edema)
    • Weight gain due to a buildup of extra fluid
    • Fatigue
    • Loss of appetite
    • Low levels of protein in the blood (hypoalbuminemia)
    • Higher than normal fat and cholesterol levels in the blood (hyperlipidemia)

    Nephrotic Syndrome can typically be diagnosed with a urine test.

    Nephrotic Syndrome can be “primary” or “secondary” in nature.

    Diseases that affect only the kidneys are called primary causes of Nephrotic Syndrome. Doctors often call these diseases “idiopathic,” which means that they arise from an unknown cause. Some of these diseases include:

    • Minimal Change Disease (MCD) – most common in children
    • Focal Segmental Glomerulosclerosis (FSGS)
    • Membranous Nephropathy (MN) – most common in adults
    • IgA Nephropathy (IgAN)

    Secondary Nephrotic Syndrome is caused by an underlying, systemic condition like diabetes, lupus, HIV, and others.

    The Kidney Health Gateway is a website owned and operated by NephCure Kidney International. The purpose of this website is to help patients with rare forms of primary Nephrotic Syndrome get connected to expert care and cutting-edge treatment options. By answering a few questions about you or your loved one’s condition, we can provide you with a list of clinical trials and/or expert doctors in your area.

    If you have additional questions, please visit or email


    Still have questions?
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