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Helpline

0300 111 1234

ADPKD

ADPKD

Autosomal dominant polycystic kidney disease

ADPKD

Autosomal dominant polycystic kidney disease

Autosomal dominant polycystic kidney disease (ADPKD) is the most common inherited kidney disease affecting over 12 million people worldwide and up to 70,000 in the UK. It's estimated that between 1 in every 400 to 2,500 people has the disease. It can affect women and men equally, across all ethnic groups.

Read more …ADPKD

Stay up to date

Stay up to date

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Tick the boxes above to let us know how we can contact you. We will hold the details you provide for communication, marketing, analysis and administration purposes. You can ask us to remove you from our database at any time and we will never give your information to other organisations.

Read our privacy policy to find out what data we collect and hold, what it is used for and where it is stored. Contact us if you have any questions about data protection.

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Educational events

Educational events

PKD in-person and online educational events

Join our free, friendly and relaxed events — hear from medical experts, get your questions answered, and connect with others who understand life with Polycystic Kidney Disease (ADPKD and ARPKD).

Upcoming in-person and online events.

See below for our PKD Live online Q&A recordings.

Read more …Educational events

PKD Helpline

PKD Helpline

Ring our confidential PKD Helpline 0300 111 1234 for emotional support, practical advice and information from people with personal experience of PKD. We’re open 9:30am to 5:00pm, Monday to Friday, except bank holidays.

There should be no extra cost if you have free call packages but if concerned about charges, send a text to 07793632836.

If you can’t ring or text us, send a direct private message on Facebook messenger between 9:30am and 5:00pm Monday to Friday. Or email: [email protected]

“You'll never know how much I valued speaking to you. I will remember you forever. You are so calming.”

- Anonymous

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Read more …PKD Helpline

Facebook groups

Facebook groups

Our Facebook groups are welcoming private communities of people who know about life with PKD. UK only.

For ADPKD - autosomal dominant polycystic kidney disease

For ARPKD - autosomal recessive polycystic kidney disease

“I found the group on Facebook and was immediately immersed into a very friendly and welcoming environment.
I felt so much better.”

- Vicky

Medical disclaimer: Content published on social media and online communities is not meant as a substitute for professional medical advice. You must consult your GP, hospital consultant, pharmacist or other health/social care professional if you have any concerns about your health or social situation.

Read more …Facebook groups

PKD Support Groups

PKD Support Groups

Choose the support group that's best for you.

If you're looking for a relaxed place where you can share your PKD experiences, find support, information, and friendship, join one of our support groups.

“It was great to meet others in a similar situation.
I felt so much better.”

- Maggie

Some support group meetings are in-person (often at a local cafe), whilst others are held online (Zoom).

  • Regional Groups - Hosted by volunteers with personal experience of PKD.  Please click on the map below to find your nearest local group.
  • 'Let's Talk about it...' - One-hour online discussions covering topics like diagnosis, tolvaptan, PLD, and transplant.
  • 'Time to Chat about ARPKD' - A dedicated group for parents, carers, and adult patients affected by autosomal recessive polycystic kidney disease (ARPKD).

Our support groups are growing, thanks to our incredible volunteers! The map above shows our regional in-person support groups.

The following are available online:

  • Low Clearance Group (online) – for those people wanting to discuss low kidney function, transplantation and dialysis choices.
  • Young Adult Group (online)

Check out our upcoming groups - click 'Find a Support Group'!

Got questions or interested in hosting a group in your area? Please email Susan. 

Upcoming support group meetings

Find a support group

To hear about our latest news and future events:

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Need medical advice?

We cannot give medical advice at a support group. If you need medical advice, please contact your GP, kidney doctor or another relevant specialist.

Read more …PKD Support Groups

Supporting you

Supporting you

PKD can be tough to deal with.

Whether you are newly diagnosed, have lived with PKD for years or care for someone affected, you're not alone, you've got us!

For information, practical advice or just someone to talk to - we're here to help.

  • PKD Support Groups

    For companionship and understanding, join a local or virtual support group. Owing to COVID-19, some meetings are still held on Zoom, whilst others are face-to-face. 

    Read more

  • Facebook groups

    Looking for a friendly and private place to connect and share with others like you?

    Read more

  • PKD Helpline

    Need to speak with someone in person? Find about our confidential helpline and other ways to get in touch.

    Read more

  • Educational events

    Come to a free educational event. Open to all ADPKD and ARPKD patients, families and carers.

    Read more

  • Financial advice

    We know that living with PKD can bring financial challenges. The support you may be entitled to depends on things such as your income, savings, living costs and health needs.

    Read more

  • Insurance

    Finding affordable insurance with PKD can sometimes be tricky. The good news is that specialist firms offer cover for people with pre-existing conditions such as PKD. You may pay a little more, so it’s worth shopping around.

    Read more

  • PKD App

    We've created a new, free, self-help PKD App to inform and educate people who are newly diagnosed or at early stages of autosomal dominant polycystic kidney disease (ADPKD).

    Read more

  • PKD Exercise Programme

    Exercise programme for everyone living with PKD. Build strength, knowledge and confidence through a progressive exercise and renal rehab programme.

    Read more

Get in touch

Please contact us by emailing [email protected] if you have a question or would like to chat to one of the team.

Read more …Supporting you

Annual accounts

Annual accounts

Read or download past Annual Report and Accounts

Contact us if you have any questions.

Read more …Annual accounts

Feedback

We welcome feedback on the information provided on this webpage. If you have any feedback regarding the information provided on this webpage, please complete the Feedback Form