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Intro to Rare Kidney Disease (RKD)

Learn insights into chronic kidney disease (CKD) verses rare kidney diseases (RKD), including detailed information on different types of RKD, management of end-stage kidney disease, treatment options like dialysis and kidney transplants, pediatric care considerations, and practical guidance for those newly diagnosed with RKD.

While chronic kidney disease (CKD) casts a wide net, affecting 31 million individuals in the United States alone, NephCure takes a closer look — specifically focusing on rare, protein-spilling kidney diseases. Rare, protein-spilling kidney diseases injure the filtering units in the kidney, called glomeruli, which allows protein, and sometimes blood, to ‘leak’ out of the bloodstream and into the urine. These rare kidney diseases (RKD) can happen without cause, be genetic, or have environmental causes. For context, in the United States, a kidney disease is considered rare when it affects less than 200,000 Americans. In Europe, a condition is rare when it affects less than 2,000 people.

RKD vs. CKD

Learn more about the differences between RKD and CKD, explore how kidneys work within our bodies, and understand the signs and symptoms of RKD. We’ll help you further understand the kidney issues you’re facing so that you can take charge of your health.

RKD overview

Types of Rare Kidney Disease

There are multiple types of rare kidney diseases (RKD). Dive deeper into understanding what causes the specific type of RKD you or your loved one is affected by. We cover how each type of RKD is diagnosed, potential treatment options, and more.

Explore Different Types of RKD

Newly Diagnosed?

Are you just starting out in your RKD journey? For so many people, coping with a recent diagnosis of rare kidney disease means feeling afraid, worried, or even alone. Take back your health and your hope by understanding your disease more in depth. We’ll break down the step-by-step actions to ensure you’re receiving the best care possible.

I’m Newly Diagnosed with RKD

Pediatric Care

Is your child affected by RKD? The pediatric journey can look different than the adult patient journey. Learn more about the unique challenges and risks associated with pediatric patients, and the treatment options available.

Learn more

End-Stage Rare Kidney Disease

Explore the breakdown of the five stages of kidney disease and discover how kidney function is actually measured. Understand what dialysis is, and the role of kidney transplants.

navigating end-stage kidney disease

Latest Resources

Informational Documents

Patient Empowerment Flyer

Fact Sheet

Congenital Nephrotic Syndrome & Infantile Nephrotic Syndrome

Video

The History & Innovation of C3G: Patient Summit Seminar with Dr. Corey Cavanaugh

Educational Materials

School Accomodations

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Kidney Health Risk Quiz

Get insights and take proactive steps to protect your kidney health today! This quick and easy quiz evaluates your lifestyle, medical history, and other factors to provide a comprehensive risk assessment. Don’t wait—empower yourself with the knowledge to maintain your kidney health.

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