An Alport Syndrome Journey: From Powerless to Empowered - A Patient Perspective.

As an Alport syndrome patient, caregiver, and executive director of Alport Syndrome Foundation, I am aware of the frequently challenging road in seeking an accurate diagnosis. Our journeys are scattered with misdiagnosis, missed opportunities for accurate diagnosis, counterproductive medications, and overwhelming guilt when our children are diagnosed. We understand that most of our healthcare providers know very little about our disease.

A National Registry for People With All Stages of Kidney Disease: The National Kidney Foundation (NKF) Patient Network.

Rationale & Objective: The National Kidney Foundation (NKF) launched the first national US kidney disease patient registry, the NKF Patient Network, that is open to patients throughout the continuum of chronic kidney disease (CKD). The Network provides individualized education and will facilitate patient-centered research, clinical care, and health policy decisions. Here, we present the overall design and the results of a feasibility study that was conducted July through December 2020.