American Kidney Fund shares future goals for Unknown Causes of Kidney Disease Project
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The American Kidney Fund convened at a working session summit to discuss key goals, progress and upcoming steps for the Unknown Causes of Kidney Disease Project, according to an American Kidney Fund press release.
“Too many patients fall into late-stage kidney disease or kidney failure, without a clear understanding of why. This can have dire consequences, such as delayed treatment, additional comorbidities and even the loss of a transplanted kidney,” LaVarne A. Burton, president and CEO of the American Kidney Fund (AKF), said in the press release. “We are working to bring together a thoughtful, dedicated collaboration among the kidney care community, resulting in steady progress toward making systematic changes that will help reduce the number of patients unaware of the origins of their kidney disease.”
Plans for Unknown Causes of Kidney Disease Project advancements focus on public policy regarding equitable insurance coverage and genetic testing coverage for kidney disease.
Members of the project’s implementation group also proposed empowering patients and caregivers by making resources available to ensure an accurate diagnosis by their clinicians. Similarly, the project members plan to increase health care awareness by addressing and closing the knowledge gap among medical professionals.
“Sanofi Genzyme has a long-standing commitment to improving the lives of people living with rare renal diseases,” Duane Clark, general manager of U.S. rare diseases at Sanofi Genzyme, said in the release. “As part of that effort, we are proud to be an ongoing supporter of the important work of the American Kidney Fund and the Unknown Causes of Kidney Disease project, including sponsorship of the Dec. 6 summit. We know that many people enter late-stage kidney failure without knowing the cause of their disease. The UCKD Summit offers a unique opportunity to bring a wide variety of stakeholders to the table to tackle the real problems in diagnosis and develop action plans, with the common hope of bringing solutions forward that benefit patients living with chronic kidney disease.”
Other attendees of the summit included Alexion Pharmaceuticals, Alport Syndrome Foundation, Fabry Support and Information Group, Natera, National Minority Quality Forum, National Organization for Rare Disorders, National Society of Genetic Counselors, NephCure Kidney International, Otsuka America Pharmaceutical Inc., Renal Physicians Association, Travere Therapeutics and Vertex Pharmaceuticals Inc.
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