American Kidney Fund Announces Support for Two Rare Kidney Disease Education Campaigns

ROCKVILLE, Md. (Jan. 24, 2023) – The American Kidney Fund (AKF) today announced sponsorship from Novartis Pharmaceuticals Corporation (Novartis) for education and awareness campaigns for two rare kidney diseases: complement 3 glomerulopathy (C3G) and IgA nephropathy (IgAN). Through these campaigns, AKF will provide patient-friendly information to support increased understanding of these complex, rare kidney diseases, including how to manage them, and connect patients to specialized resources and organizations that can further aid them in their care journey.

Both C3G and IgAN are a result of improper immune system function. In the case of C3G, the alternative complement pathway becomes overactive and damages the kidneys, ultimately reducing their ability to filter blood and leading to kidney failure in about half of adults who are diagnosed with the disease. IgAN is an autoimmune disease that causes immune complex deposition in the kidneys which triggers inflammation and damage to the glomeruli, the tiny filters in the kidneys. This damage affects the kidneys' ability to filter waste from the bloodstream.

"These rare diseases can be difficult to diagnose, often going undetected for years while irreparable damage is silently done to the kidneys," said LaVarne A. Burton, AKF President and CEO. "With support from Novartis, we hope to spread awareness of these diseases and help the kidney community become empowered to take charge of their health so they can get diagnosed and learn about managing these kidney diseases."

As part of these education and awareness campaigns, AKF will create a dedicated webpage for C3G, providing an overview of the disease, and develop a downloadable guide to help patients learn how to best talk to their doctors about the possibility of having C3G. The campaign will also include educational videos, including a series highlighting patient voices, helping those diagnosed with this rare disease feel less alone.

For the IgAN campaign, AKF will expand its dedicated IgAN webpage with information about nutrition and mental health resources to help manage the disease. A downloadable guide to help patients talk to their doctor about IgAN and an educational video will also accompany the campaign.

"Novartis is proud to support these campaigns as part of our long-standing commitment to slowing kidney disease progression and improving patient outcomes by working to address the barriers often impeding healthcare," said Victor Bulto, President, Innovative Medicines US, Novartis. "These two rare kidney diseases, C3G and IgAN, can place a substantial hardship on people with these conditions and their caregivers, and this partnership is an important step in helping reduce those physical and emotional burdens."

The new campaigns are in keeping with AKF's ongoing work to provide essential resources to people with rare kidney-related diseases, such as AKF's Unknown Causes of Kidney Disease Project, which seeks to improve understanding of how undiagnosed or misdiagnosed causes of kidney disease directly impact patient care and outcomes.