AKF announces formation of the Unknown Causes of Kidney Disease Coalition
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In a press release, the American Kidney Fund announced the formation of the Unknown Causes of Kidney Disease Coalition.
“The Unknown Causes of Kidney Disease (UCKD) Coalition is united in its commitment to advance policies and legislation that will help people with kidney disease, in particular rare kidney diseases, get the answers and support that they need,” LaVarne A. Burton, president and CEO of AKF, said in the press release. “Everyone with kidney disease should receive an early diagnosis in order to give them the opportunity to treat the disease and delay or prevent kidney failure.”
Fifteen organizations and individuals make up the UCKD Coalition, including Alexion, AstraZeneca Rare Disease; Alport Syndrome Foundation; the AKF; Delphine S. Tuot, MDCM, MAS, associate professor at University of California, San Francisco and interim division chief at Zuckerberg San Francisco General Hospital; Emory School of Medicine; Fabry Support and Information Group; Frances Ashe-Goins, RN, MPH, FAAN, kidney patient caregiver, AKF ambassador and UCKD Task Force Member; Natera; National Organization for Rare Disorders; National Society of Genetic Counselors; Nephcure; Otsuka America Pharmaceutical Inc.; Sanofi; Travere Therapeutics and Vertex Pharmaceuticals Inc.
The coalition will bring attention to the state of rare kidney diseases and recommend strategies to policymakers to address it. The coalition will write letters to Congress and perform other advocacy efforts.
This coalition follows the development of the UCKD Project, which as Healio previously reported, was explored at a summit in 2021.
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