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.

Make a difference 

in the lives of 

rare kidney patients.

Rare kidney disease patients 
and their families

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 we 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.

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Rare kidney disease patients deserve better.

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.

Get Involved: Which of these recommendations tops your/your organization’s priorities list? 

deserve better.

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Join us in fighting for a new era in rare kidney care.

With input from patients, healthcare providers, diversity health organizations, payers and more, we've developed a set of high level recommendations to 
usher in a new era of rare kidney disease care.

in partnership 

*Retrophin rebranded as Travere Therapeutics in November 2020