“A new partnership between the National Kidney Foundation (NKF) and the Alport Syndrome Foundation (ASF) is designed to give hope to the thousands of patients, including children and their families, who suffer from debilitating Alport syndrome, a rare genetic kidney disorder.
NKF and ASF will collaborate on the NKF Patient Network – Alport Syndrome, a new sub-registry devoted to Alport syndrome patients within the NKF Patient Network, a registry for people with all stages of kidney disease. The NKF Patient Network is the only kidney disease registry that has both patient-entered data combined with electronic health records (EHR). Patients with all stages of kidney disease can register and add their important health information. The unique digital platform is designed to improve the lives of people with kidney disease by better informing research, clinical care, drug development, and health policy decisions, as well as give kidney patients the tools they need to stay educated and healthy.”
Learn more, here.