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(KING OF PRUSSIA, PA- FEB. 19, 2019)- NephCure Kidney International (NephCure), a not-for-profit organization focused on accelerating research for effective treatments for rare forms of Nephrotic Syndrome, announced today the launch of a newly designed patient-centric website, KidneyHealthGateway.com; a resource to help approximately 100,000 Nephrotic Syndrome patients nationwide access expert care and cutting-edge research opportunities for rare and chronic kidney diseases.
The website is aimed at assisting patients, through a user-friendly platform, connect to appropriate clinical trial opportunities. After answering several questions regarding their health and diagnosis, patients are shown a list of clinical trials fitting their criteria—ultimately showing each patient their best individualized trial options.
“We are thrilled to debut our new website and assist patients by providing access to the optimal care and innovative research they need. There’s more interest in glomerular diseases now than ever before, and in 2019 we’ve seen a marked increase in the number of clinical trials for Focal Segmental Glomerulosclerosis (FSGS), IgA Nephropathy, and other forms of Nephrotic Syndrome. The Gateway initiative also represents a true cross collaborative effort and includes active partners from government agencies, patients, physicians, and research organizations, as well as industry. It’s a crucial time to fill these clinical trials and deliver on our promise to usher in better treatments for our patients,” Joshua Tarnoff, NephCure’s CEO said.
Because KidneyHealthGateway.com is designed to improve many aspects of a patient’s quality of life, the website will also include a list of ‘Nephrotic Syndrome Specialists’ in order to connect patients to glomerular kidney disease experts earlier in their diagnosis. Delay in finding expert care can result in a lack of access to contemporary treatment approaches and a delay in gaining access to potentially relevant clinical trials. The goal of the Nephrotic Syndrome Specialists program is to improve patients’ quality of life and reduce the potential for irreversible kidney damage by providing earlier access to clinicians who are specialists in and routinely treat Nephrotic Syndrome.
The ‘Nephrotic Syndrome Specialists’ program and KidneyHealthGateway.com are two parts of a larger, all-encompassing initiative NephCure has created to grow the glomerular kidney disease community and ultimately fill clinical trials. This ‘Gateway’ initiative also includes six professional working groups addressing barriers to patient recruitment, and the expansion of this patient community through global engagement and the inclusion of all primary glomerular kidney diseases. In service to this initiative, NephCure has formally partnered with the IgA Nephropathy Foundation of America with plans to complete a full organization merger in the future.
Aliza Thompson, MD, MS, Deputy Director of the Division of Cardiovascular and Renal Products in the Center for Drug Evaluation and Research of the FDA, announced, “We are hopeful that this initiative will improve outcomes for our patient community and lead us closer to providing safe and effective treatments for primary glomerular kidney diseases.”
Support for KidneyHealthGateway.com and the overall initiative to improve access to care and ensure trial recruitment is provided by Retrophin, Inc.; Pfizer Inc.; Mallinckrodt Pharmaceuticals; Reata Pharmaceuticals; Variant Pharmaceuticals, Inc.; Goldfinch Bio; Achillion Pharmaceuticals; and ChemoCentryx.
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. Specifically, NephCure is focused on glomerular diseases such as: FSGS, IgA Nephropathy, Minimal Change Disease, Membranous Nephropathy, C3 Glomerulopathy, and Membranoproliferative Glomerulonephritis. NephCure is headquartered in King of Prussia, Pennsylvania. For more information about the organization, visit NephCure.org or call 1-866-637-4287.
