For the Health of It: Mapping the Path to a Cure for IgAN
In this episode of For the Health of It, host Bill Evans, Chief Brand Officer, Komodo Health™, spoke with Bonnie Schneider, Director and Co-Founder of the IgA Nephropathy Foundation. The nonprofit patient advocacy group partners with health professionals, organizations, and communities to drive awareness, fund research, support and empower patients, and work to find a cure for the rare kidney disease, IgA Nephropathy.
As a caregiver with nearly 20 years of experience fighting for more education and open discussion about IgA Nephropathy, Bonnie brought a unique perspective to the program. She emphasized how important patient centricity is in creating support programs for the patients and their families who are battling this disease, and the critical role that advocacy organizations play in bridging the information gap between patients and providers.
The IgA Nephropathy Foundation and Komodo Health, along with their partners at Chinook Therapeutics, are leveraging data and technology to target and engage key medical providers across the U.S. with new education programs. Early detection and screening can save lives, and by making providers more aware of the symptoms, testing, and early-stage clinical trials that may be available for patients, the IgA Nephropathy Foundation hopes to change both how this disease is treated, and how patients are supported on their treatment journey.
As part of that work, Bonnie was able to share some initial results around the number of Asian and South Asian patients with IgA Nephropathy, and the comparatively limited number of providers who are offering care to some of the more rural communities serving these populations. Bonnie and her team are currently undertaking a project to translate their educational materials into a wider range of languages, helping to ensure that all patients, regardless of what language they speak most comfortably, have access to the information that can help educate, inform, and improve outcomes. While the research continues to develop, IgA Nephropathy believes that if advocacy groups, providers, and policymakers are armed with real-world, patient-centric insights, eventually we will find a cure.
Read more about Komodo’s work with IgAN and Chinook Therapeutics