American Kidney Fund's Unknown Causes of Kidney Disease Coalition Set to Advance Policies on Rare Kidney Diseases

ROCKVILLE, Md. (Sept. 26, 2022) – The American Kidney Fund (AKF) today announced the formation of the Unknown Causes of Kidney Disease (UCKD) Coalition, comprising 15 organizations and individuals aligned in their efforts to support policies and actions aimed at identifying kidney disease of unknown origin. The coalition arose out of AKF's UCKD Project, which seeks to improve understanding of how undiagnosed or misdiagnosed causes of kidney disease directly impact patient care and outcomes.

A diverse group of kidney care experts, organizations, people living with kidney disease and caregivers, many of whom participated in the UCKD Project's public policy workgroup, form the UCKD coalition.

"The 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," said LaVarne A. Burton, President and CEO of AKF. "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."

Nearly 810,000 people in the U.S. are living with kidney failure, which is most often caused by diabetes and/or high blood pressure. About 5% of kidney failure cases are attributed to unknown causes, according to the U.S. Renal Data System. However, an AKF survey of health care providers found that an estimated 15% of providers' patients have kidney disease with no known cause.

Members of the UCKD Coalition are as follows:

• Alexion, AstraZeneca Rare Disease
• Alport Syndrome Foundation
• American Kidney Fund
• Delphine S. Tuot, MDCM, MAS; Associate Professor, University of California, San Francisco, and Interim Division Chief, Zuckerberg San Francisco General Hospital
• Emory School of Medicine
• Fabry Support and Information Group
• Frances Ashe-Goins, R.N., 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
• Vertex Pharmaceuticals Inc.

AKF's UCKD Project has been actively working across three areas that are critical to improving diagnosis and treatment of kidney disease: finding public policy solutions, such as improving access to genetic counseling and testing for people with kidney disease, expanding provider education and educating patients about kidney disease testing.

The coalition will bolster efforts to educate and inform policy makers about the state of rare kidney disease and recommend strategies to address it and understand the causes. Activities will include letters to Congress and to federal agencies and independent panels to support patient-centered changes, Congressional briefings and other advocacy efforts.

The UCKD Project is supported by Title Sponsor Sanofi, Leadership Sponsors Otsuka America Pharmaceutical, Inc.; Travere Therapeutics and Vertex Pharmaceuticals Inc. and Champion Sponsors Alexion, AstraZeneca Rare Disease; and Natera.