Externally led patient-focused drug development (EL-PFDD) meetings bring together patients and care partners, US Food and Drug Administration (FDA) .. Read more representatives, pharmaceutical companies, and doctors who are experts in the particular disease. The goal is to hear from patients who have the disease, in order for the FDA and pharmaceutical companies to understand the patient experience. The National Kidney Foundation and NephCure Kidney International are conducting an EL-PFDD meeting on Membranous Nephropathy to inform the FDA about the patient perspective of living with this disease. Understanding the patient perspective may help the FDA make informed decisions regarding approvals of potential treatments for Membranous Nephropathy. After the meeting, a report titled “Voice of the Patient” will be sent to the FDA. This will be a reference for future decisions about potential medicines for Membranous Nephropathy. NephCure Kidney International’s ® mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases.
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