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Emotional Tools for Patients and Caregivers Navigating Relapse

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Living with a rare kidney disease is linked to higher rates of anxiety, depression, and chronic stress—especially during relapse and periods of uncertainty. Yet the emotional impact of long-term illness often goes unaddressed in medical care.

Still Standing is an experiential session for patients and care partners that combines clear, research-informed insights with practical tools. Drawing on health psychology, trauma-informed care, and nervous system science, participants will learn how ongoing medical stress affects both mind and body—and how to respond in ways that support resilience over time.

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Support

Get help coping with the challenges of living with FSGS through support groups like NephCure. Learn more about our how we can support you.

Nutrition

Eat a diet low in salt and processed foods to manage your blood pressure and reduce strain on your kidneys. Learn more about a kidney-friendly diet and get our cookbook.

Latest Resources

Informational Documents

Sparsentan (FILSPARI) for FSGS: FAQs

Fact Sheet

Congenital Nephrotic Syndrome & Infantile Nephrotic Syndrome

Video

Navigating Nutrition in Protein-Spilling Kidney Disease

Educational Materials

School Accomodations

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