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American Kidney Fund convenes Rare Kidney Disease Action Network to advocate change for patients with rare causes of kidney disease

ROCKVILLE, Maryland (United States) – 13 June 2024 – The American Kidney Fund (AKF) is proud to announce the launch of theRare Kidney Disease Action Network (RKDAN),a new effort that will play a vital role in ensuring that the voices of people fighting rare kidney diseases are heard and amplified. 

The RKDAN’s newly formed and growing roster includes more than 60 people with rare kidney diseases who will work with AKF to effectively advocate on behalf of the rare kidney disease community for policies and regulations at both the state and federal level. In addition to advocacy efforts, AKF will develop new educational resources informed by the real-world experiences of RKDAN members.

“Over the last six years, the American Kidney Fund has significantly expanded resources for people with rare kidney diseases, developing successful education and awareness initiatives dedicated to APOL1-mediated kidney disease (AMKD), atypical hemolytic uremic syndrome, cystinosis, primary hyperoxaluria type 1, IgA nephropathy (IgAN), and complement 3 glomerulopathy, among others, and we’ve worked to raise the profile of rare kidney disease on Capitol Hill and through state legislative advocacy efforts. Most recently we hosted the first annual AMKD National Awareness Day to increase recognition of this rapidly progressive genetic form of kidney disease.” said AKF President and CEO LaVarne Burton.

“We’ve also led efforts to bring together stakeholders on this issue through our Unknown Causes of Kidney Disease Project. The creation of the Rare Kidney Disease Action Network is an important next step to work with and mobilize patient advocates whose powerful stories can make an impact on policymakers.”

In this first year, the RKDAN will focus heavily on issues faced by people living with IgAN, a rare autoimmune disorder in which the immune system produces abnormal antibodies in the kidneys, triggering inflammation and damaging them in the process. Using the training model for its more than 30,000 AKF Ambassadors, AKF will provide advocacy training to RKDAN members, with an emphasis on specific policy issues that impact their rare disease. 

AKF will also help individuals identify their unique patient story, while also highlighting the commonalities they share with other kidney patients. In September 2024, up to 25 members of the RKDAN will have the opportunity to practice these skills when they participate in AKF’s second Rare Kidney Disease Action Summit. On this day, advocates will visit Capitol Hill to meet with Congressional staff and members of Congress to urge them to support policies affecting people with IgAN and other rare kidney diseases. 

The RKDAN is made possible with support from Otsuka America Pharmaceutical, Inc., Novartis Pharmaceuticals Corporation and Travere Therapeutics. 

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 holds the highest 4-Star rating from Charity Navigator for 21 consecutive years and the Platinum Seal of Transparency from Candid, formerly known as GuideStar. 

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