This info sheet provides helpful information for parents of children with PKD, caregivers, and physicians.

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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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Related Resources

ADPKD Registry Annual Report 2021: What We’re Learning from Participants

ADPKD Registry Annual Report 2021: What We’re Learning from Participants

The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 2,300 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain. Each year, we plan to produce an annual report to share with you what we’re learning from participant responses to these modules.

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