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Madi was only 4 years old when she faced potential kidney failure. It took Madi’s mom Christine years to realize these harsh medications were not only failing to improve Madi’s kidneys but were making her sicker overall. Madi’s nephrologist insisted the current medications were the best they would get. Christine asked for further testing, but they denied her requests as Madi’s kidneys worsened.
Then Christine found NephCure. She attended a patient summit and broke down in tears when she learned there were better options for her daughter. Madi no longer had to suffer. Generous support from people like you helped NephCure connect Christine with an expert doctor who listened to her concerns. He ordered a genetic test, revealing that Madi has an extremely rare genetic cause of focal segmental glomerulosclerosis (FSGS). Madi was enrolled in a clinical trial, which gave her access to cutting-edge medication.
With the help of NephCure and her new doctor, Madi got her life back. Her kidney disease is slowing, she gained 30 pounds, and is doing better than she has in years!
“Through NephCure, I learned more about Madi’s disease and gained the confidence to seek care from top specialists,” Christine said.
We have entered a new, unprecedented era of rare kidney disease care. Now more than ever, NephCure is laser-focused on ensuring all patients have access to the latest research and care.
NephCure offers online education and support programs that empower rare kidney disease patients and their families, just like Madi and Christine. Through our NephCure Specialists program, we help connect patients with expert doctors who provide the latest treatment options. We are expanding local communities to help connect people to peer support, but more work is needed.
“We will forever be grateful for NephCure’s education and support,” Christine said. “It’s given our family our life back.”
Will you donate to help us ensure that every patient receives the best care and support possible? To make a contribution to our organization before the year end, please click here. Thank you in advance for your generosity.
