PKDF has invested over $2 million since 2006 for research, support, education and awareness for ARPKD, ADPKD in children, and congenital hepatic fibrosis (CHF), a disease closely associated with ARPKD. This info sheet provides helpful information for parents of children with PKD, caregivers, and physicians.
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The PKDF Research team is excited to expand the features available in the ADPKD Registry in summer 2023. This project has been carefully planned and executed with our patients at the center. The last few years have been spent building the largest ADPKD patient-reported outcomes dataset.
With PKD Connect, no one faces PKD alone. In this brochure, learn about resources available, like the Peer Mentor Program, the ADPKD Registry, the PKD Hope Line, and information to navigate a PKD diagnosis and manage living with the disease.
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