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The following refers to insurance in the UK only.

You must declare that you have PKD if you are asked. Insurers may or will refuse to payout otherwise, or may cancel your policy and keep your premiums.

One specialist broker we consulted has advised us on the level of insurance cover that is available to:

  • People with PKD
  • And those who are closely related.

For people with PKD:

  • Critical Illness Cover (CIC) is not possible unfortunately.
  • Income protection is also not possible.
  • Life cover is possible with a rating of at least 250% and potentially a max term of 20/25yrs from the date of diagnosis. The term ‘rating’ means that the original premium will be multiplied by that amount and added on.  E.g. £10 at 250% rating = £35.

All patients with PKD will be subject to full medical underwriting.  This means they may need to attend a nurse screening, GP medical or similar medical tests to help Insurer’s underwriters decide a rating level.

People who have a close relative with the disease will also have difficulty getting cover:

  • CIC is not available until age 30+ and then will be rated. If over 40 it is possible to get standard rates without any rating.
  • Income Protection is not available until age 30+ and will then be rated
  • Life cover is possible depending upon age, as follows:
    • Before age 30: 100% rating
    • Between age 30 and 40 - if no investigations have been carried out then rating would be 50%; if there has been a negative ultrasound test then standard rates
    • Over age 40, if you don’t have PKD then standard rates apply

Travel insurers used to always decline insurance to people with PKD and other high-risk conditions. However, there a number of firms that now offer such policies.

Click here for details of specialist insurance firms known to the PKD Charity.

Please note however that the PKD Charity does not and cannot recommend any insurer or financial services provider.

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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