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ARPKD - A Guide for Parents

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This information sheet is about autosomal recessive polycystic kidney disease (ARPKD). It’s for expectant parents who have been told that their unborn child has or may have ARPKD; parents of babies and children with ARPKD; and ARPKD carriers who are planning a family. It explains the causes of ARPKD, how it’s diagnosed, its symptoms, treatment, and how the disease might progress.

We are sorry if you’re upset by any of the information in this guide. ARPKD is often severe, and diagnosis is a worrying time for parents. Please call our helpline on 0300 111 1234 if you would like to talk to someone directly about ARPKD.

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PKD Charity is a Member of

  • Fundraising Regulator Website
  • Visit The Information Standard website
  • Visit PKD International website
  • Visit Ciliopathy Alliance website
  • Visit the Genetic Alliance UK website
  • Rare Disease UK Website
  • Specialised Healthcare Alliance Website
  • FEDERG Website
  • Visit EURORDIS website