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.

Download our free, self-help PKD App created to inform and educate people who are newly diagnosed or at early stages of Autosomal Dominant Polycystic Kidney Disease (ADPKD). The app:

• Provides credible information and health advice - all in one easily accessible place
• Offers practical tips for everyday life
• Gives links to trusted further information and available support

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

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

• ADPKD adults patients, family members and carers
• Parents of children with ADPKD

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

- Vicky

For help and guidance online, please read the PKD Charity Policy on Social Media and Online Communities.

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.

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. 

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

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.

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

• Annual Report and Accounts 1 Apr 2024 to 31 Mar 2025
• Annual Report and Accounts 1 Apr 2023 to 31 Mar 2024
• Annual Report and Accounts 1 Apr 2022 to 31 Mar 2023
• Annual Report and Accounts 1 Apr 2021 to 31 Mar 2022
• Annual Report and Accounts 1 Apr 2020 to 31 Mar 2021
• Annual Report and Accounts 1 Apr 2019 to 31 Mar 2020
• Annual Report and Accounts 1 Apr 2018 to 31 Mar 2019
• Annual Report and Accounts 1 Apr 2017 to 31 Mar 2018
• Annual Report and Accounts 1 Apr 2016 to 31 Mar 2017
• Annual Report and Accounts 1 Apr 2015 to 31 Mar 2016 (combined charities accounts)
• Annual Report and Accounts 1 Apr 2014 to 31 Mar 2015
• Annual Report and Accounts 1 Apr 2013 to 31 Mar 2014
• Annual Report and Accounts 1 Apr 2012 to 31 Mar 2013
• Annual Report and Accounts 1 Apr 2011 to 31 Mar 2012
• Annual Report and Accounts 1 Apr 2010 to 31 Mar 2011
• Annual Report and Accounts 1 Apr 2009 to 31 Mar 2010
• Annual Report and Accounts 1 Apr 2008 to 31 Mar 2009
• Annual Report and Accounts 1 Jan 2007 to 31 Mar 2008 (15 mths)
• Annual Report and Accounts 1 Apr 2006 to 31 Dec 2006
• Annual Report and Accounts 1 Apr 2005 to 31 Dec 2005

Contact us if you have any questions.

PIF TIK accreditation

The PKD Charity has been awarded ‘trusted health care information creator’ status by the Patient Information Forum, an accreditation known as the PIF TICK.

The scheme is the UK’s only assessed quality mark for print and online health and care information. The award follows an external review of how the PKD Charity produces health information for the public.

To be awarded the PIF TICK an organisation must show its health information production process meets 10 criteria, which include making sure users are involved in the development of information, making sure the information is clear, and written to meet the accessibility needs of users.

We are committed to producing reliable, good quality and evidence-based health information. All the content on this site within the sections on 'ADPKD' and 'ARPKD' are reviewed, revised and updated in accordance with the PIF TICK accreditation process.

The PKD PIF TICK process incorporates these principles:

• Information production - we have a defined process in place that we follow when producing information for the first time and when reviewing it.
• Evidence source - all our information comes from recognised, trusted sources and references are available for each fact sheet on request.
• User understanding and involvement - this ensures that information produced for people and families affected by PKD meets their needs.
• End product - each information piece is checked and read by experts and lay readers for consistency and quality.
• Feedback - we have a process for managing feedback and ensuring that errors or omissions are corrected.
• Review - we aim to review each information piece at least every 3 years and sooner if there is new evidence or information.

Please contact us if you have any questions about how we produce health information.

The PKD Charity is responsible for the accuracy of the health and social care information on this website and in printed publications where the PIF TICK health information production process has been applied.

User-generated information is excluded from the scope of accreditation: blogs, forums and personal experience pages or stories – except where personal experience information has been produced through a systematic process of validation.

Our fundraising promise

At PKD Charity, we have made this Fundraising Promise to our supporters. It outlines how we will behave when doing our fundraising and ensures fundraising is legal, honest, open, transparent and accountable.

PKD Charity is committed to good fundraising practice and is registered with the Fundraising Regulator, which sets and maintains the standards for charitable fundraising in the UK.

• We will adhere to the Fundraising Code of Practice.
• We will monitor fundraisers, volunteers and third parties working with us to raise funds, to ensure that they comply with the Code of Fundraising Practice and with this Promise.
• We will comply with the law as it applies to charities and fundraising.
• We will display the Fundraising Regulator badge on our fundraising material to show we are committed to good practice.

• We will tell the truth and we will not exaggerate.
• We will do what we say we are going to do with donations we receive.
• We will be clear about who we are and what we do.
• We will give a clear explanation of how you can make a gift and change a regular donation.
• Where we ask a third party to fundraise on our behalf, we will make this relationship and the financial arrangement transparent.
• We will be able to explain our fundraising costs and show how they are in the best interests of our cause if challenged.
• We will ensure our complaints process is clear and easily accessible.
• We will provide clear and evidence based reasons for our decisions on complaints.

• We will respect your rights and privacy.
• We will not put undue pressure on you to make a gift. If you do not want to give or wish to cease giving, we will respect your decision.
• We will have a procedure for dealing with people in vulnerable circumstances and it will be available on request.
• Where the law requires, we will get your consent before we contact you to fundraise.
• If you tell us that you don’t want us to contact you in a particular way we will not do so. We will work with the Telephone, Mail and Fundraising Preference Services to ensure that those who choose not to receive specific types of communication don’t have to.

• We will treat donors and the public fairly, showing sensitivity and adapting our approach depending on your needs.
• We will take care not to use any images or words that intentionally cause distress or anxiety.
• We will take care not to cause nuisance or disruption to the public.

• We will manage our resources responsibly and consider the impact of our fundraising on our donors, supporters and the wider public.
• If you are unhappy with anything we’ve done whilst fundraising, you can contact us to make a complaint. We will listen to feedback and respond appropriately to compliments and criticism we receive.
• We will have a complaints procedure, a copy of which will be available on our website or available on request.
• Our complaints procedure will let you know how to contact the Fundraising Regulator in the event that you feel our response is unsatisfactory.
• We will monitor and record the number of complaints we receive each year and share this data with the Fundraising Regulator on request.

If you are unhappy with anything we’ve done whilst fundraising, you can contact us to make a complaint.