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Share Your Story

Every person’s journey with rare kidney disease is unique, but there is one thing that we all have in common: the power of our stories.

By sharing our experiences, we can inspire hope, create awareness, and make a real difference in the lives of others. Whether you are a patient, caregiver, or supporter, your story matters. It can help others understand what it’s like to live with rare kidney disease, connect with those who are going through similar challenges, and advocate for better care and treatments.

Share your story with us, and help make a difference!

Latest 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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