American Kidney Fund opens network to promote disease awareness, advocacy

Rare Kidney Disease Action Network is focused on rare kidney disorders

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

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The American Kidney Fund (AKF) has launched the Rare Kidney Disease Action Network (RKDAN), an initiative to raise awareness and give greater voice to people with rare kidney disorders, including atypical hemolytic uremic syndrome (aHUS).

AKF will work along with the more than 60 people already enrolled in the RKDAN to advocate for policies and regulations, at both the U.S. state and federal levels, that favor those with rare kidney diseases. The initiative also will develop new educational resources drawing on the real-world experiences of its 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 … 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 [APOL1-mediated kidney disease] National Awareness Day to increase recognition of this rapidly progressive genetic form of kidney disease,” LaVarne Burton, the AKF’s president and CEO, said in a group press release.

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“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,” Burton said.

aHUS results when a part of the immune system called the complement cascade becomes overactive, causing inflammation and blood clotting in small blood vessels, particularly those in the kidneys. About half of aHUS patients develop end-stage kidney disease, which may require a kidney transplant.

In its first year, RKDAN will focus on the challenges facing patients with IgA nephropathy (IgAN), a rare autoimmune disorder marked by kidney inflammation and damage. In addition to this patient group, the AKF noted that people with lupus nephritis, aHUS, Fabry disease, and other diseases affecting the kidneys also may be eligible to be part of the network.

AKF will harness its experience with the more than 30,000 AKF ambassadors to provide advocacy training to RKDAN members, focusing especially on issues that are relevant for their disease. Helping patients identify their disease’s unique features, while finding commonalities with other kidney disease patients is another AKF aim.

Up to 25 RKDAN members will be able to hone their skills at the AKF’s second Rare Kidney Disease Action Summit, scheduled for September, the group reported. The day also is marked by an advocates’ visit to Capitol Hill, where they’ll meet with members of Congress and their staffs to bring into action policies that affect people with IgAN and other rare kidney diseases.

The RKDAN is supported by Otsuka America Pharmaceutical, Travere Therapeutics, and Novartis Pharmaceuticals.