Rare kidney diseases can be hard to understand and manage. From your moment of diagnosis through various tests and treatments, you’ll need care from skilled providers who understand the complexities of your condition. Rare kidney diseases like complement 3 glomerulopathy (C3G) and immune-complex-mediated glomerulonephritis (IC-MPGN) aren’t always easy to diagnose. Choosing treatments can be challenging, as each case is unique.

Treating rare kidney diseases can be complicated, so it’s important to have trustworthy specialists caring for you. Rare kidney diseases can have multiple causes including autoimmune disorders and genetic mutations (changes), and specialists take these causes into account while creating a treatment strategy. A multispecialty team can help you manage your rare kidney disease.

Understanding the Difference Between Nephrologists and Urologists

Nephrologists and urologists are two specialists with some overlapping knowledge. Nephrologists treat conditions affecting the kidneys and kidney function.

Urologists, on the other hand, specialize in treating conditions that affect the entire urinary tract. That includes your kidneys, ureters, bladder, and urethra. Beyond the urinary tract, urologists also treat some conditions affecting the reproductive system.

A key difference is that urologists are trained to perform surgery, while nephrologists typically are not. Urologists can perform some surgeries on the kidneys — including, for example, removal of kidney stones, kidney tumors, and even kidney transplants in some cases. Nephrologists and urologists often work together closely to treat kidney diseases, and you may have both on your health care team.

Specialists Who Treat Rare Kidney Disease

Nephrologists and urologists aren’t the only specialists who treat rare kidney diseases and their complications. A rare kidney disease can affect organs outside the urinary system, so you may be referred to specialists who treat other organs and systems. Below is a summary of the types of health care providers who may treat your kidney disease and related concerns.

Nephrologists

Nephrologists can provide many of the tests and treatments you may need for your chronic (ongoing) kidney disease, including:

• Kidney function tests (including blood tests and urine analysis)
• Kidney biopsies
• Imaging tests of your kidneys (including ultrasounds and CT scans)
• Dialysis
• Kidney transplant preparation, follow-up care, and recovery

It may be challenging to find a nephrologist with availability. There is only one nephrologist for every 2,800 people with moderate chronic kidney disease in the United States.

Pediatric Nephrologists

Some forms of rare kidney disease occur in children, including many inherited kidney diseases that appear at birth or in early childhood. Autosomal recessive polycystic kidney disease, for example, affects 1 in 20,000 children. Kids with this and other rare kidney diseases often need lifelong medical treatment, starting with care from a pediatric nephrologist.

Pediatric nephrologists can treat rare kidney diseases affecting babies, children, adolescents, and sometimes young adults. They provide many of the same services as adult nephrologists including kidney biopsies. They collaborate with other specialists like dietitians and pediatric surgeons based on a child’s needs.

Primary Care Providers

Your primary care provider is your go-to health care provider for all your basic, nonemergency health needs. In many cases, a primary care provider is the first to identify signs of kidney disease.

As you receive care for rare kidney disease, it’s still important to work with your primary care provider. They can treat high blood pressure and other co-occurring conditions.

Renal Pathologists

Your nephrologist may recommend a kidney biopsy (tissue sample from the kidney) if you show signs of kidney damage, or to see how well your treatment is working. The nephrologist may perform the biopsy, or it can be done by an interventional radiologist, a doctor who uses imaging tests to guide procedures.

A renal pathologist, a doctor who studies kidney diseases, looks at the tissue sample under a microscope and uses special techniques to check for unusual changes. The word “renal” means related to the kidneys. Renal pathologists review the results of a kidney biopsy along with your symptoms and provide an accurate diagnosis, which helps other specialists plan your treatment.

Radiologists

Interventional radiologists often perform kidney biopsies. They use imaging techniques like ultrasounds or computed tomography (CT) to guide the needle into your kidney and collect the tissue sample.

Ultrasound- and CT-guided kidney biopsies help radiologists safely collect the sample from your kidney. These strategies are especially important if they want to gather tissue from a specific part of your kidney like tumors or masses. Chronic kidney disease is associated with an increased cancer risk, which can cause tumors and other abnormal growths in your kidneys.

Transplant Surgeons

If your kidney disease progresses into kidney failure, also called end-stage renal disease, you will either need dialysis or a kidney transplant. A kidney transplant is a surgery that replaces your kidney with a working kidney from another person, called a donor. The donor can be living or someone who has died.

Transplant surgeons perform kidney transplant surgeries and, along with your nephrologist, help guide you through recovery. They are an important part of your transplant care team, which also includes other specialists who work together to support your health.

Genetic Counselors

Your nephrologist or primary care provider might recommend genetic testing if they suspect your rare kidney disease to be hereditary, if your family has a history of end-stage renal disease, or if your rare kidney disease doesn’t respond to treatment with steroids.

You’ll meet with a genetic counselor before and after genetic testing to decide which tests you should get. A genetic counselor also helps you interpret the results of genetic tests and what they mean for your family. They can also refer you for clinical trials, support groups, and other specialists.

Dietitians

You may have to follow a special diet to help manage your rare kidney disease, but you don’t have to learn the ropes alone. A dietitian can help you change your diet to maintain your kidney function and lower health risks.

How To Find a Specialist

When you have a rare kidney disease, finding a specialist who understands rare diseases can be challenging. The good news, however, is that it isn’t impossible. Understanding your rare kidney disease empowers you to make informed decisions about your care, including choosing specialists.

If you already have a primary care provider, they can make referrals to put you in touch with specialists. They can help you put together a team of specialists to manage your care. You may want to check for specialists on your insurance company’s website or call them to find specialists who accept your insurance plan.

You may also want to search online for a kidney disease specialist. The NephCure for Rare Kidney Disease online database can help you find providers in your area. You can also search for nephrology departments at hospitals in your area. You may find the most success looking at large medical centers in your state.

Talk With Others Who Understand

MyKidneyDiseaseTeam is the social network for people with kidney disease and their loved ones. On MyKidneyDiseaseTeam, members come together to ask questions, give advice, and share their stories with others who understand life with kidney disease.

Have you visited a specialist for rare kidney disease treatment? Share your experience in the comments below, or start a conversation by posting on your Activities page.