Autoimmune glomerular diseases affect predominantly young patients who are otherwise healthy.

According to the Centers for Disease Control and Prevention, approximately 10% of the adult U.S. population has kidney disease. Kidney disease can have many different causes. High blood pressure and diabetes are the two most common causes of kidney disease in the United States. However, some experts question whether high blood pressure is a common cause of kidney disease and raise the question that this diagnosis often obscures subtle immune-mediated glomerular disease.

In addition, more than 100 different types of glomerular diseases, some inherited, some acquired, can affect the kidneys. The majority of these diseases can be considered rare diseases.

One in 10 Adults Have Kidney Disease

Glomerular diseases...

make up the majority of kidney disorders

are the leading cause of dialysis dependence

more than 100 distinct diagnosis & variations of have been discovered

Unfortunately, rare diseases are notoriously difficult to diagnose and treat. There are many reasons why this is the case, and perhaps one of the most important is the difficulty for clinicians and scientists to meet enough patients to study their disease and outcomes.

Patients often struggle to find more information about their disorders due to their rarity and complexity. Through this patient portal, a group of kidney doctors would like to develop educational material for patients to access. Further, we would help patients connect via a patient forum and virtual coffee hours to share their experiences and mentor each other.

If you are a patient or patient caregiver and have a general question about our programs or would like to get involved, please contact us at info@glomcon.org.

Please note that we do not give medical advice. This portal is solely for general lay education and patient-to-patient connection.  

Who is affected?

Autoimmune-mediated glomerular diseases affect patients of all ethnicities, with a predominance toward young and otherwise healthy patients. However, adults and older patients can be affected as well.

As mentioned above, high blood pressure and diabetes are the two most common causes of kidney disease in the United States. When diabetes affects the kidneys, it is often an injury to the glomerulus (doctors refer to it as diabetic glomerulopathy). Each kidney has approximately 500,000 to 1,000,000 glomeruli or as we say “Gloms.” These Gloms are barely visible but are one of the most complex filters nature has ever built. Blood flows through them and gets filtered 24 hours, seven days per week. These filters are so delicate that injury to only a fraction of them can lead to “leakage” of protein or blood in the urine. Indeed, protein in urine can often be the first measurable sign of damage from diabetes to the human body. In addition to diabetes or high blood pressure, more than 100 different types of disease also affect the Glom and can lead to protein or blood in the urine.

High risk patients

Autoimmune-mediated glomerular diseases can complicate pregnancies and put mother and fetus at risk for adverse outcomes. Early diagnosis, pre-planning, and multidisciplinary care provided by experienced clinicians are critical. 

Ongoing damage to the Gloms can ultimately lead to irreversible scarring of the kidneys. Kidney doctors can treat some forms of kidney disease. It is essential to know that chronic kidney disease does not cause symptoms early on. The only way to tell if someone has damage to the Glom or has kidney disease is through blood and urine test. Luckily, there are treatment options for several forms of kidney disease, and often the progression of chronic kidney disease can be slowed or prevented.

Long-term outcomes

Barriers to early diagnosis are numerous and treatment options are scant. Nevertheless, kidney doctors often can improve the outcomes of patients with glomerular diseases and ensure a long and meaningful life.