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APOL1 Kidney Disease

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African Americans make up 13% of the US population but account for nearly 35% of people with kidney failure in the US.

NephCure is here to help change that. We are a nonprofit patient advocacy group dedicated to empowering people with APOL1 kidney disease, and other rare, protein-spilling kidney diseases, to take charge of their health while leading the revolution in research, new treatments, and care.

Fast Facts


1 in 8 African Americans is at risk of a genetic form of kidney disease (caused by the APOL1 gene mutations).


APOL1 kidney disease is particularly
aggressive and currently has no
FDA-approved treatments.


APOL1 kidney disease most frequently affects individuals of African descent (i.e., people who identify as Black, African American, Hispanic/Latino, or Afro-Caribbean) in early-mid adulthood.


Approximately 40% of African Americans on dialysis have kidney failure caused by APOL1.


You may be experiencing kidney disease and be unaware — 90% of people have no visible symptoms.

What is APOL1 Kidney Disease?

Every person inherits one copy of the APOL1 gene from each parent. Sometimes, there is a mutation in one or both of the APOL1 genes. Those who inherit two mutations of the APOL1 genes have 10x-30x the risk of developing kidney disease. These mutations are only found in people of African descent.

Partner with us to change the story of APOL1 and kidney disease in African American communities.

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

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

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