Do you or your loved one suffer from Membranous Nephropathy? We are here for you.
Membranous Nephropathy (MN) is a rare kidney disease characterized by thickening in the part of the kidney that filters blood: the glomerular basement membrane. The thicker membrane does not work normally and causes protein that belongs in the blood to be spilled into the urine.
Symptoms of Membranous Nephropathy include:
- Swelling (edema) in eyes, hands, feet, and abdomen
- Foamy or bubbly urine, caused by protein spilling into urine (proteinuria)
- Can cause high blood pressure (hypertension) and high fat levels in the blood (high cholesterol)
- Low levels of protein in the blood (hypoalbuminemia)
Below are resources we’ve complied that might be useful for you:
This double-sided informational flyer on Membranous Nephropathy breaks down the basics and helps you better understand the journey you may face. It also highlights was to treat your disease and how to live with it. To download the full informational sheet, click here.
In September 2020, we hosted a NephCure U session specifically on Membranous Nephropathy. Dr. J. Ashley Jefferson from the University of Washington lead, “Membranous Nephropathy and You,” and discussed more on the diagnosis, treatment options, and clinical trials. Listen in on the hour-long educational webinar below.
Later this year, on August 27, 2021 from 10am-3pm ET, NephCure and the National Kidney Foundation will host an Externally Led Patient-Focused Drug Development (EL-PFDD) meeting specifically on Membranous Nephropathy. What are EL-PFDD meetings? They bring together patients and care partners, US Food and Drug Administration (FDA) representatives, pharmaceutical companies, and doctors who are experts in the particular disease. The goal is to hear from patients who have the disease, in order for the FDA and pharmaceutical companies to understand the patient experience. You participation is critical. Last year, we hosted an EL-PFDD about focal segmental glomerulosclerosis (FSGS). To watch the recording, click here. Please keep a look out for more information on this meeting as it becomes available. Until then, if you have any questions, please reach out to Kelly Helm at firstname.lastname@example.org.
In addition to these resources, there are also clinical trials available for Membranous Nephropathy patients. These trials are the only way scientists will be able to find a new, potential treatment options specifically for Membranous Nephropathy patients. Patients, like you and your loved ones, play an extremely crucial role. Check out some pre-screener questions below, provided by MorphoSys, a pharmaceutical company leading one of these MN studies, to see if their clinical trial, M-PLACE, could be a fit for you or your loved one.
- Are you between 18-80 years old?
- Have you already been diagnosed with Anti-PLA2R Antibody Positive Membranous Nephropathy (aMN)?
- Have you ever had a kidney biopsy? If yes, was the biopsy acquired performed within the last 5 years?
- Please confirm that you are currently not receiving dialysis.
- Are you currently taking blood pressure, blood thinner, or diuretic medications?
- Would you be willing to participate in a clinical trial?
To learn more about MorphoSys’ clinical trial, click here. If you meet the criteria listed above, find the location closest to you and click the “I’m Interested” button to get in touch with an investigator.
You can find a full list of clinical trials for all protein-spilling kidney diseases on KidneyHealthGateway.com.