American Kidney Fund Launches Rare Kidney Disease Action Network

The American Kidney Fund (AKF) has launched the Rare Kidney Disease Action Network (RKDAN), partnering with more than 60 people with rare kidney diseases to advocate for policies and regulations at the state and federal levels.

The goal is to ensure that the voices of people fighting rare kidney diseases are heard and amplified. In addition, AKF will develop new educational resources informed by the input of RKDAN members.

AKF will provide advocacy training to RKDAN members, with an emphasis on specific policy issues that impact their rare disease. During its first year, the RKDAN will focus on IgA nephropathy (IgAN). This September, up to 25 members of the RKDAN will participate in AKF’s second Rare Kidney Disease Action Summit. Advocates will meet with members of Congress and their staff to garner support for policies affecting people with IgAN and other rare kidney diseases.

“The creation of [RKDAN] is an important next step to work with and mobilize patient advocates whose powerful stories can make an impact on policymakers,” said LaVarne Burton, AKF president and chief executive officer. Otsuka America Pharmaceutical, Inc., Novartis Pharmaceuticals Corporation, and Travere Therapeutics provided support for the creation of RKDAN.