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American Kidney Fund Raises Awareness for Rare Kidney Diseases for Rare Disease Day

By: via GlobeNewswire

ROCKVILLE, Md., Feb. 28, 2025 (GLOBE NEWSWIRE) -- Today, on Rare Disease Day, and on behalf of all those who live a rare kidney disease, the American Kidney Fund (AKF) proudly joins this international effort to increase awareness of rare diseases. An estimated 300 million people worldwide and 30 million Americans live with a rare disease, and there are more than 150 rare kidney diseases.

“Living with kidney disease is a difficult challenge to navigate for patients and their families, and it can feel even more isolating and frustrating when you are living with a rare kidney disease,” said AKF President and CEO LaVarne A. Burton. “AKF has been leading efforts to address the needs of people living with a rare kidney disease, and on Rare Disease Day and beyond, we continue our work to provide resources and support to these members of the kidney community and increase recognition of rare kidney conditions.”

AKF is committed to improving understanding of rare kidney diseases and advancing innovation, from providing educational resources to its ongoing work on the Unknown Causes of Kidney Disease (UCKD) Project, which aims to improve understanding of how undiagnosed or misdiagnosed causes of kidney disease directly impact patient care and outcomes. Since its launch in 2020, AKF has convened stakeholders in the UCKD Project and engaged advocates, industry leaders and kidney disease experts through policy work, health care professional education, and the development of caregiver and patient resources, including AKF’s Know Your Cause webpage, which gives people the tools they need to look into the cause of their kidney disease.

AKF also launched the Rare Kidney Disease Action Network (RKDAN) in 2024, a growing network of people with rare kidney diseases who are working with AKF to effectively advocate on behalf of the rare kidney disease community for improved policies at the state and federal level and helping to ensure the voices of people with rare kidney diseases are reflected in AKF programs. In September 2024, RKDAN members participated in AKF’s Rare Disease Advocacy Day, and many will return to Capitol Hill for the 2025 Rare Disease Advocacy Day this fall. AKF and members of RKDAN also joined the EveryLife Foundation for Rare Diseases on Capitol Hill earlier this week for Rare Disease Week on Capitol Hill to advocate for legislation important to people living with rare kidney disease. In addition to advocacy efforts, AKF is developing new educational resources informed by the real-world experiences of RKDAN members, including a video series depicting their journeys living with rare kidney disease.

Published research has reinforced the importance of a complete and accurate diagnosis of kidney disease, including a recent study of kidney biopsies in patients with diabetic kidney disease (DKD) that revealed more than half of patients had a kidney disease other than DKD, including rare diseases like IgA nephropathy and focal segmental glomerulosclerosis. The results of the study indicate that many people with kidney disease attributed to diabetes are misdiagnosed and therefore may not be receiving the best treatment options for their kidney disease. For kidney disease, delays in accurate diagnosis and treatment can cause the disease to progress to advanced stages or kidney failure before a patient even realizes they have a kidney problem.

AKF thanks the many sponsors that have supported its work in this area. The RKDAN is supported by Novartis Pharmaceuticals Corporation, Otsuka America Pharmaceutical, Inc. and Travere Therapeutics. The UCKD Project is supported by Title Sponsors Novartis Pharmaceuticals Corporation and Travere Therapeutics; Leadership Sponsors Otsuka America Pharmaceutical, Inc. and Vertex Pharmaceuticals Inc.; Champion Sponsors Alexion, AstraZeneca Rare Disease; Boehringer Ingelheim; Natera; Novo Nordisk and Sanofi. 

###

About the American Kidney Fund

The American Kidney Fund (AKF) fights kidney disease on all fronts as the nonprofit with the greatest direct impact on people with kidney disease. AKF works on behalf of 1 in 7 Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. AKF fights for kidney health for all through programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy. AKF is one of the nation’s top-rated nonprofits, investing 97 cents of every donated dollar in programs, and it has received 24 consecutive 4-Star ratings from Charity Navigator as well as the Platinum Seal of Transparency from Candid, formerly known as GuideStar. 

For more information, please visit KidneyFund.org, or connect with us on Facebook, Twitter, Instagram and LinkedIn.


Nancy Gregory
American Kidney Fund
(240) 292-7077
ngregory@kidneyfund.org

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