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Membranous Nephropathy: Sharing Breakthroughs and Recent Discoveries

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Dr. Larry Beck from Boston University for an informative session regarding the latest advancements in MN, including new treatment guidelines. Watch this video to learn about the quickly changing Membranous Nephropathy landscape.

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Plant-Based Diet and Kidney Disease

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Mental Health Patient and Caregiver Panel

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Newly Diagnosed Parents – Nephrotic Syndrome 101

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Newly Diagnosed Parents – Nephrotic Syndrome 101

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Join Dr. Susan Massengill from Levine Children’s Hospital in Charlotte, North Carolina share the basics of nephrotic syndrome.

You will leave this session with a better understanding of nephrotic syndrome, it’s history, how it impacts the kidneys, how the kidney’s impact a patient, and best practices when treating and living with nephrotic syndrome.

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Newly Diagnosed Parents – Nephrotic Syndrome 101

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MCD vs. FSGS: Breakdown of Diagnostics and Clinical Course

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MCD and FSGS, two major causes of Nephrotic Syndrome, have aspects that resemble one another.

Dr. Suneel Udani reviews the similarities and differences between MCD and FSGS and discusses the age-old question: are these two diseases the same?

Dr. Udani also reviews current treatment options, the significance of precision medicine, how research is uncovering new factors that may be driving disease progression, and how current clinical trials may provide the key to stopping it all.

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How to Take Control of Your Rare Kidney Disease

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In this webinar, led by Dr. Chia-Shi Wang from Emory, you will learn more about Nephrotic Syndrome and other rare kidney diseases, and review some of the challenges with managing it.

Dr. Wang also discusses the possibilities of e-Health and how the Internet and mobile devices may improve your health and the care you receive from your doctor!

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Newly Diagnosed Parents – Nephrotic Syndrome 101

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U: A C3G Update Webinar

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This NephCure U webinar, hosted by Dr. Carla Nester, gives us an update on C3G (a collective name for a group of rare kidney diseases that involve a specific part of your immune system).

Dr. Nester also explains more about the current treatment options for C3G and updates us on the clinical trials available.

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Understanding Rare Kidney Diseases: The Role of Genetic Testing

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Genetic testing is changing the face of medicine. It’s no longer an expensive, out-of-reach option in your diagnostic journey! On Thursday, April 13 at 8 p.m. ET, we were joined by expert nephrologist, Dr. Joshua Zaritsky, to discuss genetics in rare kidney disease (RKD). Some of the topics included:

1. How genetic testing can impact your RKD diagnosis

2. How it can change the treatment course of your disease

3. How to affordably and easily access genetic screening for RKD.

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Patient Panel | Mental Health & Rare Kidney Disease

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For Mental Health Awareness Month, NephCure hosted a patient panel focusing on mental health and rare kidney disease. Our patient panelists shed light on the mental health struggles that many RKD patients experience, but also share the hope laced throughout their journeys. Moderated by Montrez Lucas, NephCure’s Associate Director of Patient Navigation, this mental health discussion spotlights the panelists’ coping skills, support systems, and how they continue to brave their physical health battles in the midst of anxiety, depression, and stressors.

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Fireside Chat with NORD on the IgAN Patient Assistance Program

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A recap of Montrez Lucas’ interview with Jill Hollander, the Vice President of the National Organization for Rare Diseases (NORD), about the innovative IgA Nephropathy (IgAN) Patient Assistance Program.

During this engaging webinar, we reviewed NORD’s financial assistance program, exploring how it can provide crucial support for those affected by IgA Nephropathy. From assistance with insurance premiums and co-pays to aiding with diagnostic testing and offering travel support for clinical trials or consultations with disease specialists, NORD’s program was introduced as a valuable resource.

Watch this insightful and empowering webinar aimed to alleviate the challenges associated with managing IgAN by equipping participants with valuable information and resources. Stay tuned for more updates and be sure to subscribe for future webinars that provide ongoing support for the IgA Nephropathy community and visit our events page for upcoming webinars.

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If you or your loved ones are dealing with IgAN, this is a resource you won’t want to miss!

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Nephrotic Syndrome Learning Experiment

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Supplies

Glass/Jug of water (Blood)

Yellow Food Coloring (Toxins)

Any color of bead (Albumin)

Two Coffee Filters (Kidneys)

Two Glasses/Clear Plastic Jars/Cups

Kidney Model or Image with
picture of Filtering Units

Age appropriate scissors

Explanation

The kidney’s function is to clean our blood. The kidneys have millions of filtering units called glomeruli that act kind of like a coffee filter. The kidney filters gather waste products and eliminate them in the form of urine but do not allow the good products like blood, immunoglobulins and protein (albumin) to pass through. Instead they send them back into the bloodstream. (Show diagram or model) The purpose of this experiment is to give patients a visual demonstration of how their kidney’s are not functioning properly.

Part 1: Normal Kidney

  • Have a child take beads and put them into the jug of water (blood). The beads represent the good protein (albumin).
  • Then take a normal coffee filter and place it over a clear container.
  • Place a couple drops of yellow food coloring onto the center of the filter paper.
  • Pour the water and beads over the filter.

Ask: What do you see?

Explanation: The water should turn yellow, as the toxins are removed in the urine, but there should be no good products like protein leaking out. Once the kidney filters out the toxins, it returns the good products back into the blood where they are needed.

Part 2: Kidney affected by Nephrotic Syndrome

Ask: In NS the filters (glomeruli) lose their shape. Now when blood passes through what happens?

  • Take another coffee filter and get them to cut holes (big enough for the beads to pass through).
  • Place the filter over a clear container.
  • Place a couple drops of yellow food coloring onto the center of the filter paper.
  • Pour the water and beads over the filter.

Ask: What happened? Did the filter with holes work properly?

Explanation: This is what happens in the kidneys of a person when they have NS. The protein leaks from the blood into the urine because the kidneys cannot filter it properly. When we don’t have enough protein in our blood we become swollen, and the protein can cause foamy urine.

Understanding Primary Nephrotic Syndrome

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NEPHROTIC WHAT..?”

Some symptoms of nephrotic syndrome include:

Proteinuria- Large amounts of protein ‘spilling’ into the urine

Edema – Swelling in parts of the body, most noticeable around the eyes, hands, and feet that become painful

Hypertension – High blood pressure

Hypoalbuminemia – Low levels of albumin in the blood

Hypercholesterolemia – High level of cholesterol

Someone who is experiencing these symptoms but has not had a kidney biopsy is diagnosed with nephrotic syndrome. To learn more about what is causing a patient’s nephrotic syndrome, doctors may choose to perform a kidney biopsy. After biopsy, a patient is usually diagnosed more specifically, based on what can be seen under the microscope.

The common diagnoses are:


Focal Segmental Glomerulosclerosis (FSGS):

Some sections of kidney filters show scarring.


Minimal Change Disease:

Kidney tissue shows very little change from normal kidney tissue.


Membranous Nephropathy

Immune system attacks
kidney tissues and
damages filtering units.


Congenital Nephrotic Syndrome & Infantile Nephrotic Syndrome

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Congenital Nephrotic Syndrome (CNS)

is a rare kidney disorder that begins at birth or within the first 3 months of life.

Infantile Nephrotic Syndrome (INS)

is also a rare kidney disorder that occurs between 3 months and 1 year of life.


Overview and Symptoms:

Focal Segmental Glomerulosclerosis (FSGS) is a rare kidney disease characterized by dysfunction in the part of the kidney that filters blood (glomeruli). Only some glomeruli are affected, but continued damage can lead to kidney failure.

Protein in the urine, which can be foamy (proteinuria)

Low levels of protein in the blood (hypoalbuminemia)

Swelling in parts of the body, most noticeable around the eyes, hands, feet, and abdomen (edema)

High Triglyceride levels

Can cause high blood pressure (hypertension) and high fat levels in the blood (high cholesterol)

Fast Facts


The majority of CNS and INS cases are caused by genetic changes that cause defects in the filtering units of the kidneys.


80% of CNS cases are caused by four different gene mutations: NPHS1 and NPHS2 (the most common types), PLCE1, WT1, LAMB2


2/3 of INS cases are explained by four gene mutations: NPHS1, NPHS2, LAMB2, or WT1.


The majority of CNS mutations (NPHS1 or NPHS2) are autosomal recessive diseases, meaning both parents are carriers of CNS and the possibility of having an affected child is 25% (or 1 in 4 children will have the disease).


NPHS1 is also known as the Finnish-type of CNS, and is most commonly found in people with Finnish ancestry. Non-Finnish individuals often have NPHS2 mutations.


Children with NPHS1 mutations are often born prematurely with low birth weight.


Infants with CNS may have failure to thrive, have frequent life-threatening infections, and be at risk for abnormal blood clotting.


Many CNS patients develop end-stage kidney disease develop end-stage kidney disease between ages 2 and 8, and require dialysis and transplant.


Biopsy findings usually indicate FSGS.


Some causes of CNS/INS are not genetic. Other non-genetic causes include infections such as cytomegalovirus, congenital syphilis, and congenital toxoplasmosis.

Treating Your Disease

Short-Term Goals

Supplement the protein spillage through albumin infusions, provide a high-calorie diet due to the risk for poor growth, and monitor for the development of anemia and hypothyroidism. Immunoglobulin replacement may also be needed if infections are frequent or severe. Often medications such as ACE inhibitors and nonsteroidal anti-inflammatory drugs may be used to slow the spillage of protein in the urine.

Long-Term Goals

Removal of the kidneys may be necessary with a need for dialysis until kidney transplantation can occur.

There are no FDA-approved treatment options for Congenital and Infantile Nephrotic Syndrome. Often, genetic forms of Congenital and Infantile Nephrotic Syndrome patients do not respond to steroids and most do not respond to immunosuppressant medications. Treatments are aimed at controlling the symptoms, such as swelling, high blood pressure, and high cholesterol, and reducing the risks of blood clots and infections. Many patients require a bilateral nephrectomy (removal of kidneys), need dialysis, and are referred for a transplant.

  • Genetic testing is a priority, after infectious screening is negative
  • Optimize nutritional intake with high-calorie and high-protein diet
  • Albumin infusions are often needed to manage swelling
  • Closely monitor intake and output

The Following Measures May Be Needed to Improve Health Outcomes:

  • Prevent infections and may need immunoglobulin replacement
  • Prevent high blood pressure
  • Prevent blood clots or thrombosis Prevent anemia
  • Prevent severe edema
  • Prevent dehydration
  • Prevent malnutrition
  • Thyroxine therapy for hypothyroidism

Understanding APOL1 Kidney Disease in the African American Community

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African Americans make up 13% of the US population but account for nearly 35% of people with kidney failure in the US.

NephCure is here to help change that. We are a nonprofit patient advocacy group dedicated to empowering people with APOL1 kidney disease, and other rare, protein-spilling kidney diseases, to take charge of their health while leading the revolution in research, new treatments, and care.

Fast Facts


1 in 8 African Americans is at risk of a genetic form of kidney disease (caused by the APOL1 gene mutations).


APOL1 kidney disease is particularly
aggressive and currently has no
FDA-approved treatments.


APOL1 kidney disease most frequently affects individuals of African descent (i.e., people who identify as Black, African American, Hispanic/Latino, or Afro-Caribbean) in early-mid adulthood.


Approximately 40% of African Americans on dialysis have kidney failure caused by APOL1.


You may be experiencing kidney disease and be unaware — 90% of people have no visible symptoms.

What is APOL1 Kidney Disease?

Every person inherits one copy of the APOL1 gene from each parent. Sometimes, there is a mutation in one or both of the APOL1 genes. Those who inherit two mutations of the APOL1 genes have 10x-30x the risk of developing kidney disease. These mutations are only found in people of African descent.

Partner with us to change the story of APOL1 and kidney disease in African American communities.