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Foundation for inclusion

How the National Kidney Foundation is driving patient-centric R&D

Hosting a patient-focused drug development workshop was the National Kidney Foundation Inc.’s first step in assuming the role of facilitator to collect patient perspectives that will shape R&D for kidney disease.

On Aug. 4, the advocacy group hosted a meeting of patients and caregivers, senior FDA leaders and drug company executives to discuss patient perspectives on C3 glomerulopathy (C3G). C3G is a rare condition caused by deposition of fragments of complement 3 (C3) protein in the kidneys.

“The patients with C3G and caregivers who courageously shared their stories provided a unique opportunity for the patient voice to be incorporated into drug development from the beginning,” said CMO Joseph Vassalotti.

Vassalotti said the foundation chose C3G for its maiden effort because the condition affects a small yet engaged patient population that has a poor prognosis despite standard treatments. He said the patients tend to be knowledgeable because the road to diagnosis may be long and frustrating.

“The diagnostic journey for

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