Rare Kidney Disease Patients Deserve Better

Help us improve the lives of families living with these conditions by downloading our new community call to action.

Families impacted by rare kidney diseases live in uncertainty and fear. These diseases are largely “invisible,” meaning patients suffer in isolation and face criticism from others who minimize their illness with comments like, “Can’t you just get a transplant?” or “You don’t look sick.” On top of being rare, many of these kidney diseases are chronic, complex conditions plagued by rollercoaster cycles of remission and relapse.

Until very recently, clinical trials in kidney disease were virtually nonexistent. While other chronic and acute diseases saw significant leaps in innovation, kidney disease treatment innovation was stagnant. Rare kidney disease patients and their families deserve better.

Fortunately, recent government action and a novel clinical trial endpoint have encouraged more innovation in the space. We just need to make sure that our systems are ready to take advantage of these innovations. That’s why NephCure Kidney International and Travere Therapeutics, in partnership with the American Association of Kidney Patients, convened patients, healthcare providers, diversity health organizations, diagnostic companies, biotechnology manufacturers, payers, and rare disease organizations to develop high-level policy recommendations to usher in a new era of rare kidney disease care.

Download the community call to action today: rarekidneyrevolution.com

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