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Navigating New Diagnosis

Navigating a new diagnosis, particularly one in the rare kidney disease space, can be a daunting journey that demands and thorough approach. Here’s how you can make sure you’re taking charge of your health and managing your care properly:

Find a NephCure Specialist

Search our curated list of NephCure Specialists, doctors who specialize in treating rare, protein-spilling kidney diseases, to find one near you to learn more about out your specific RKD. Seeing a NephCure Specialist early on in your RKD journey is crucial to getting the proper care. These doctors can help you find an accurate diagnosis and develop an effective and personalized treatment plan.

NephCure Specialists

Understanding Your Diagnosis

Click on the boxes below to learn more about your rare kidney disease diagnosis.

Review Your Biopsy

For those with RKD, having biopsies reviewed by renal pathologists is very important. These specialists can provide accurate diagnoses, enabling the development of tailored treatment plans based on the unique characteristics of your condition.

Explore Genetic Testing

Move beyond a general understanding by exploring genetic testing. This can unveil specific aspects of your diagnosis, aiding your healthcare team in tailoring a treatment plan that aligns with your genetic profile.

Lower Your Proteinuria

Your goal should be to stop or lower proteinuria, know your levels and talk to your doctor about right treatment is based on your condition. This helps you to monitor your disease progression overtime.

Patient Empowerment, Be an Advocate

Through informed discussions and active participation in your healthcare journey, you empower yourself to make decisions aligned with your values and preferences.

Mental Health & RKD

Recognize the emotional challenges that often accompany a new diagnosis. Prioritize your mental health by establishing a support system and addressing psychological aspects. Emotional well-being is important to your overall health and resilience. Early discussions empower you with coping strategies and reduce stigma.

Two women posing by a tree representing NephCure

Treatment Options

Learn more about the various medications often prescribed to those affected by rare kidney disease, including off label drugs as well as recently FDA-approved treatment options.

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Diet and Nutrition

Discover the difference a kidney-healthy diet can make. Explore delicious recipes curated by NephCure that are low in salt, fat, and cholesterol to keep your kidneys and your tastebuds happy.

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Related Resources

Informational Documents

Low Phosphorus Diet Guidelines: For Patients with Rare Kidney Disease

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

ALL RESOURCES

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