Read about grants awarded by the PKD Charity.

This fact sheet is for people with polycystic kidney disease (PKD) in the UK looking for health, travel, life or critical illness insurance. It explains why it can be harder to find insurance if you have a long-term health condition and why your premiums may be higher. This is a basic guide only: for tailored advice, please speak to an experienced insurance broker.

• What types of insurance relate to your health?
• Why does having PKD affect your insurance?
• How to find the best insurance option for you
• What if you don’t tell the insurance company that you have PKD?
• What if you have a PKD gene but have no signs of ADPKD?
• Information and support from others
• UK insurance companies

Common insurance products that can be affected by any health conditions you already have are:

• Health insurance (private medical insurance): pays for private tests and treatments for illnesses. Often only short-term (acute) illnesses are covered not long-term (chronic) ones.
• Travel insurance: helps with costs of a variety of problems that can happen during your trip, including emergency medical care, cancellations or delays, and lost or stolen belongings.
• Life insurance: gives an agreed sum of money to your family or a loved one if you die, either as a single payment or regular payments.
• Critical illness insurance: gives you an agreed sum of money if you’re diagnosed with a condition named in the policy (for example, cancer, a heart attack, or Alzheimer’s disease).

Autosomal dominant polycystic kidney disease (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD) are lifelong conditions that affect your kidneys.

They make it more likely that you’ll become unwell and need medical care. This could make it harder to find affordable insurance in a number of ways:

Health, travel and critical illness insurance

• Standard policies usually don’t cover conditions you already had before you signed up (a pre-existing condition). This means if you had PKD before you took out the insurance cover and you get ill because of your PKD, it would not be covered.
• Many standard policies don’t cover long-term conditions, so if you’re diagnosed with PKD after you take out the insurance cover, it would not be covered.
• Some specialist insurers will agree to tailor a policy for you to take into account your PKD. But the amount you pay for the insurance (the premium) is likely to be higher than standard.

Life insurance

• Because you have a long-term condition, your premiums for life insurance are likely to be higher than they otherwise would be.
• Not all insurers will agree to cover you, so you may need to shop around.

This may feel very unfair but remember that insurance companies are businesses. They need to be sure that their business can make a profit overall to exist and honour the claims they have agreed to make.

Finding the best insurance if you have a long-term condition can be tricky. Here are some tips:

• Use an insurance broker: An insurance broker or advisor can help you by explaining the pros and cons of different options, including what each policy does and doesn’t cover [5]. They should also know which companies offer tailored insurance products. You can find a broker via the British Insurance Brokers' Association (BIBA) or the Association of Medical Insurers and Intermediaries (AMII).
• Do your research: Give yourself plenty of time to read through each policy carefully. What is covered and what is excluded? How much is the premium? What is the maximum claim? Do you need to pay money towards a claim (the excess)?
• See what others say: To choose between providers, it can help to look for independent customer reviews online. For example, how easy have others found it to make a claim if needed? Remember that products change over time and your policy might differ to others’ though, so your own experience could differ to theirs.
• Consider getting separate insurance: If you’re looking for insurance for you and your family, look into whether it is better to get your insurance separately to theirs. This means the rest of your family might be able to benefit from a cheaper, standard policy.

When asked, you should always let your insurer know about any health conditions you’ve been diagnosed with. You should also keep them up to date about any new conditions you develop, in line with your policy.

If you don’t share this information, it could invalidate your whole insurance policy. This means any claim you make could be refused, whether or not it relates to your PKD.

If a relative of yours has been diagnosed with ADPKD, you might decide to get a genetic test to see if you have the gene too. If you have no symptoms, this is called a predictive test, as it is being used to predict whether you’ll develop ADPKD in the future.

Insurers are not allowed to ask you about the results of predictive genetic tests or use them to set premiums. However, if a genetic test was used to confirm your diagnosis of ADPKD, you do need to let them know if asked.

Genetic tests for ARPKD would usually be diagnostic, as it’s unlikely you would not have any symptoms.

If you’re not sure whether your genetic test was diagnostic or predictive, ask your genetics counsellor, kidney specialist, or GP to confirm.

To learn more about genetic testing and insurance, see the Association of British Insurers (ABI) guide

• The British Medical Association has produced a guide for people thinking about taking out private medical insurance.
• Which? Is a consumers’ association and company that provides information to consumers to help them make choices. It has produced information on a variety of different insurance types and how to find the best product for you.
• The British Insurance Brokers’ Association (BIBA) helps insurance brokers, advisors and customers. You can use their website to find an insurance broker near you.
• The Association of Medical Insurers and Intermediaries (AMII) is an association of insurance advisors. You can use their website to find an insurance advisor near you.
• The ABI has written a guide explaining the rules that insurers must follow regarding genetic test results.

By law, we cannot recommend any insurer or financial services provider. However, we are confident that the companies listed below can help you. They have access to a large panel of leading insurers, so that you can compare prices and choose the policy that best suits your needs.

For every policy sold, some firms will give a donation directly to the PKD Charity at no additional cost to you. These firms already work with a number of charities like us on the same basis. But please note that we are not endorsing them as exclusive providers of cover.

• Medical Travel Compared - travel insurance comparison site
• Compare the Market - comparison site
• The Insurance Surgery broker - all types of insurances
• Freedom Insurance Services - travel insurance
• Alan Boswell Insurance - travel insurance

Written by Hannah Bridges, PhD, HB Health Comms Ltd, UK.

With thanks to all those affected by ADPKD who contributed to this publication.

Ref No: PKD.INS.V2.0
Last updated: Jul 2023
Next scheduled review: Jul 2026

Disclaimer: This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.

We welcome feedback on all our health information. If you would like to give feedback about this information, please email

If you don't have access to a printer and would like a printed version of this information sheet, or any other PKD Charity information, call the PKD Charity Helpline on 0300 111 1234 (weekdays, 9:30am-5pm) or email [email protected].

The PKD Charity Helpline offers confidential support and information to anyone affected by PKD, including family, friends, carers, newly diagnosed or those who have lived with the condition for many years.

Read the latest research about polycystic kidney disease (PKD).

PKD research study groups

There are two UK clinical/research study groups, one for ADPKD (autosomal dominant polycystic kidney disease) and one for ARPKD (autosomal recessive polycystic kidney disease). If you are a doctor or other healthcare professional, and are interested to join either or both groups, please contact us.

ADPKD research priorities

The views of people affected by ADPKD are vital when deciding what to research. We asked the James Lind Alliance (who specialise in prioritising research) to help us prioritise the views of people affected by ADPKD (either directly or due to ADPKD in their family) and healthcare professionals.

To find the top 10 priorities, we funded a research Priority Setting Partnership (PSP), overseen by a steering group which included people living with and affected by ADPKD, healthcare professionals and the James Lind Alliance

We summarised 117 questions about ADPKD care and management that hadn't been answered by research into a shortlist of 35. We asked patients, family members, carers and healthcare professionals to rank which of the 35 questions were the most important to them. Over 700 people replied to our survey. The Top 10 research questions below are the result.

Read the ADPKD research priorities report (PDF, 737 KB) for more detail on each of these priorities and how we arrived at the Top 10.

Read the BMJ Open Paper.

Our next step is to encourage researchers to use the Top 10 list (and the other questions that didn’t make the top 10) to inform their research plans. 

You can see the shortlist of 35 questions, with the underlying list of 117 research uncertainties, on the website of the James Lind Alliance.

Read the ADPKD PSP scope here.

We would like to thank everyone with ADPKD, family member, carer, and healthcare professional who took part in this PSP and the James Lind Alliance facilitators. Without their time and opinions, this PSP would not have been possible. To get involved or for more information about our research priorities, do get in touch here [email protected]

Apply for a research grant

In 2025 after years of conversations and planning, we established the PKD Partnership — a bold collaboration between PKD Charity and Kidney Research UK. It’s built on our shared determination to accelerate progress in PKD research and improve outcomes for patients and families.

By working with researchers, clinicians, patients and industry, the PKD Partnership is creating a UK-wide programme that unites scientific expertise and lived experience to develop better treatments and brighter futures.

As we move forward our grant funding activity will be delivered through grant calls made by the PKD Partnership.

We’re calling on researchers, clinicians, and early-career scientists — from both PKD and other disease areas — to join us in transforming care for people with PKD.

This first round of funding from the PKD Partnership is now open, designed to support high-quality, collaborative science that accelerates discoveries, unlocks new treatments, and offers real hope to families. Researchers whose work aligns with the biological pathways involved in PKD — such as inflammation, healing, fibrosis, or imaging technologies — are encouraged to apply. Applications from early-career researchers and allied health professionals are also welcome.

• Open for applications: 11 August 2025
• Deadline: 22 October 2025

Applications are open for a range of research funding opportunities — from pilot grants and PhD studentships to clinical and non-clinical fellowships — supporting both early-stage ideas and larger, ambitious projects aligned with our strategic priorities.

Grants range from £10,000 for early pilot studies to up to £250,000 for major research projects. Additional funding is available for fellowships and studentships.

Proposals should address one or more of the PKD Partnership’s strategic priorities:

1. Biomarker and molecular insights
   Identify and validate biomarkers to predict disease progression and treatment response.
2. Preclinical innovation
   Advance reliable experimental platforms to accelerate therapeutic discovery.
3. Integrated data and translational tools
   Leverage large-scale data and computational methods to improve outcomes.
4. Personalised and preventive care strategies
   Develop tailored treatments and early interventions.

Collaboration between research centres is strongly encouraged.

Find out more and apply 

Take Part in a PKD Study

PKD research advances better treatments, earlier diagnosis, and the hope of prevention. Studies have improved blood pressure management and led to therapies that can slow disease progression. Ongoing research helps scientists better understand how cysts grow and develop new medications to protect kidney function.

Taking part in a PKD study is a meaningful way to support this progress. Clinical trials and observational studies provide vital information about how the disease develops and how treatments work in real life. Participants may also benefit from access to new therapies and closer medical monitoring.

Each person who joins a study helps move the field closer to better outcomes and greater hope for future generations.

High blood pressure (hypertension) can be an early sign of PKD, even in children.

The HIYA-PKD study is exploring how common high blood pressure is in children and young people at risk of Autosomal Dominant Polycystic Kidney Disease ADPKD).

Researchers are looking for untested 12–17-year-olds who have a parent or sibling with PKD to take part. 

The IMPEDE-PKD trial is recruiting in the UK to explore whether metformin, a medication commonly used to treat diabetes, can help slow disease progression in people with Autosomal Dominant Polycystic Kidney Disease (ADPKD).

The trial is currently open at 32 UK centres. 

The MAPLE trial is exploring a potential new treatment for Autosomal Dominant Polycystic Kidney Disease (ADPKD), aiming to slow kidney cyst growth and help kidneys stay healthier for longer.

Find out if you or a loved one meet the participation criteria and how to take part in this study: 

Your donation means we can fund vital PKD research.

Join the ADPKD
and ARPKD registries

Join the RaDaR registry

The RaDaR National Registry of Rare Kidney Diseases is a UK-wide database that collects medical information on people with rare kidney conditions, including autosomal dominant (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD).

By bringing this information together, RaDaR helps researchers better understand how PKD develops and progresses in children and adults. It also supports faster, more effective research and clinical trials into new treatments.

Both ADPKD and ARPKD are supported by RaDaR Rare Disease Groups – teams of clinicians, researchers, and patient representatives working to improve care and quality of life for those affected.

Not every NHS hospital recruits to RaDaR—but your interest can help change that. Joining RaDaR benefits you today by connecting you to the latest developments, and it benefits the entire PKD community for years to come by shaping research, care, and treatment.

PKD Charity & Kidney Research UK research partnership

PKD Charity (PKDC) and Kidney Research UK have launched a joint partnership to progress research in polycystic kidney disease (PKD).

PKD is a genetic condition where several cysts form and grow on various organs in the body, but mainly the kidneys. Affecting over 12 million people around the world and up to 70,000 adults and children in the UK, PKD is the most common genetic kidney disease and the fourth leading cause of kidney failure. There is currently no cure.

Our vision is to improve the health and quality of life of people affected by PKD. Together, we want to significantly improve PKD patient outcomes over the next ten years, through a joint research programme.

Maegan Smith (Mae) knows only too well the impact PKD can have. Mae, her dad Wayne and sister Stephanie have autosomal dominant PKD. Wayne lost his own father to kidney disease when he was nine years old. When Wayne’s own kidneys failed, he received gruelling dialysis three times a week for two years – until he recently received a kidney transplant from an anonymous living donor. Mae and Stephanie, both in their twenties, go to hospital regularly to have their kidney function checked. 

Mae explains: “Most days I don’t think about my kidney disease because I have virtually no symptoms. But some days my mind wanders to my future and the reality hits me smack in the face like a truck. I’m hopeful that before our kidneys fail, new treatments will be available to control our condition. My biggest hope is that if we have our own children one day, they won’t have to live with the same fear of kidney disease that my family has for generations.”

Kidney research is critically underfunded - in the UK, less than 1% of all health research funding goes to kidney research, and a fraction of that amount goes towards PKD research specifically.

Kidney Research UK and PKD Charity want to address this and are working together to raise awareness and funds for their new joint research programme.

The two charities are perfectly placed for this work. Kidney Research UK is the largest charity dedicated to research into kidney disease in the UK – it funds work across the whole research pipeline, from better understanding the disease, through to new ways to prevent it. PKD Charity, as the voice of people with PKD, will help to design research into PKD, help to identify research priorities, provide stewardship, evaluate research progress and help disseminate information to patients.

By working together, we plan to build capacity and capability in PKD research by awarding grants to researchers for projects, studentships, or fellowships. We will bring together our research networks and share governance and programme management. We will make PKD research a priority that benefit patients with the condition. We aim to:

• Increase our understanding of current and new biological pathways, develop new models and biomarkers to study the disease, and identify new ways to treat it
• Explore the potential around genetics and cell therapies, genomics and use of data resources including the UK Rare Renal Registry RaDaR 
• Move the evidence we gather through to the clinic, as it develops over the coming years 
• Understand complications better, including pain, and develop new approaches towards treatments

Tess Harris, CEO of the PKD Charity, said:  "I am very excited by this collaboration, which is the result of discussions over several years between our two charities. I inherited ADPKD, along with my three siblings, from my father. I have witnessed the premature death of my father and a sister and have recently had a kidney transplant following a period on dialysis. I have an affected niece and nephew.
Over my 15 years with the PKDC, as a trustee and now CEO, I have had daily contact with PKD patients and family members. I have heard their often tragic and painful stories, their battles with the stress of diagnosis and the prospect of an inevitable future blighted by kidney failure or massive cystic livers."

She continues: “Research is critical to improving their lives. As a small charity, we've been able to fund a few important projects at early research stages, including a biobank of kidney tissue donated by PKD patients and families. Kidney Research UK has been a significant funder of PKD research over 30 years. Yet, the amount spent on PKD research is miniscule compared with amounts spent on cancer, whilst the burden and cost of healthcare for PKD patients and the social burden and costs on their families is disproportionately high. Coming together with Kidney Research UK means we can make research happen much faster.”

Sandra Currie, CEO of Kidney Research UK, said: “We are delighted to be launching our partnership with PKD Charity. The coronavirus pandemic has delayed our launch plans by around six months, and it has certainly challenged our plans to combine forces to raise the money we need. But the pandemic has highlighted the need and urgency for this research, because people living with PKD are more at risk of COVID-19. Now, we are even more determined to invest in more research into this significant area of kidney disease.”

Mae comments: “This joint research programme is a huge step forward for people like me living with PKD – it will hopefully drive some incredible research into this condition forward and give hope to so many. Living with this genetic condition is a huge burden with a turbulent future ahead. Having been part of the discussions from the beginning, I can see passion and excitement from both Kidney Research UK and PKD Charity, and I really hope the research will find a breakthrough that changes the future for people living with PKD and our children.”

There are two major forms of PKD: 

• ADPKD - autosomal dominant polycystic kidney disease 
• ARPKD - autosomal recessive polycystic kidney disease 

ADPKD is the most common form of PKD; if someone has ADPKD, there is a 1 in 2 risk of passing it on to any children, meaning that many families have multiple generations of affected members. People with ADPKD can suffer throughout their lives from childhood. Two in three will experience hard-to-treat, disabling chronic pain and periodic acute pain. Nearly half of those with ADPKD will have kidney failure caused by massive cystic growth before they are 60 - requiring life-saving dialysis or a transplant. In the UK, around 1 in 10 people with a kidney transplant or on dialysis has ADPKD. Some adults will require a liver transplant and others will be at risk of devastating, life-threatening brain aneurysms. High blood pressure (hypertension) affects nearly everyone with ADPKD from an early age, with an associated increased risk of cardiovascular disease. There is only one licensed disease-modifying drug for ADPKD, which is not suitable for everyone. 

ARPKD is a rare and severe form of PKD, affecting one in every 20,000 children born in the UK. Sadly, about one baby in three with ARPKD dies from underdeveloped lungs, either during pregnancy or in the first four weeks after birth. Some children will have kidney failure in the first year of life and will need life-saving dialysis until they are able to receive a kidney transplant. A few children will also need a liver transplant owing to a complication called congenital hepatic fibrosis (CHF). Children with ARPKD commonly have very high blood pressure and impaired growth. ARPKD is usually considered a childhood disease; however, improved care means that many now live to adulthood, when they typically experience complications of CHF as well as kidney impairment. ARPKD currently has no licensed therapies.

Donate today to support our ambitious research partnership.