American Kidney Fund launches new advocacy network for patients with rare kidney disease
Click Here to Manage Email Alerts
Key takeaways:
- Policy advocacy efforts this year will focus on IgA nephropathy.
- The network has more than 60 members with rare kidney disease.
The American Kidney Fund has launched the Rare Kidney Disease Action Network, an advocacy initiative for patients with rare conditions, according to a press release.
“Over the last 6 years, the American Kidney Fund (AKF) has significantly expanded resources for people with rare kidney diseases, developing successful education and awareness initiatives dedicated to APOL1-mediated kidney disease, 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,” LaVarne Burton, president and CEO of the AKF, said in the release.
The new network will work with the AKF to propose federal and state-level policy for patients with rare kidney disease; in the first year, it will focus on IgAN.
The network’s 60-plus members will connect to share unique and shared aspects of rare kidney disease, and will receive education and awareness training from AKF, as well as advocacy training on specific policy issues that affect patients with rare kidney disease.
“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.
Otsuka America Pharmaceutical Inc., Novartis Pharmaceuticals Corporation and Travere Therapeutics are providing support for the network.
Reference:
American Kidney Fund convenes Rare Kidney Disease Action Network to advocate for policies and regulations that help patients with rare causes of kidney disease. https://www.kidneyfund.org/article/american-kidney-fund-convenes-rare-kidney-disease-action-network-advocate-policies-and-regulations. Published June 13, 2024. Accessed June 14, 2024.
Click Here to Manage Email Alerts