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Annual accounts

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PIF TIK accreditation

PIF TIK accreditation

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.

Find out more about PIF TICK

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

Disclaimer

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.

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Our fundraising promise

Our fundraising promise

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 commit to high standards

  • 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 be clear, honest and open

  • 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 be respectful

  • 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 be fair and reasonable

  • 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 be accountable and responsible

  • 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.

We are accountable

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

Read more …Our fundraising promise

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Volunteers

Volunteers

Do you have some spare time and are interested in getting involved with the work of the PKD Charity?

There are lots of ways you can help us, whether you have only an hour to spare or more time.

Do you have lived experience of PKD?

If you have firsthand experience living with PKD and a passion for helping others or raising awareness of PKD, we want to hear from you!

We are seeking volunteers to share their experiences through peer support, community outreach events, social media and PKD education initiatives.

Host a local Support Group

PKD Support Groups usually take place in a cafe, and are attended by people affected by PKD who would like to meet others in a similar situation. The role of a Support Group Host is to help organise the venue, meet and greet people when they arrive, help get the conversation going and make people feel welcome, and signpost to the charities information and support services when appropriate. This role may be suitable for you if you;

  • Like meeting people
  • Have good listening skills

Help us with our Facebook Groups moderation

Our private Facebook groups provide a safe space for people affected by PKD in the UK to access 24/7 support. We need help moderating the groups to ensure they remain welcoming, respectful, and supportive environments.

Join our Lay Reading Panel

Throughout the year, we invite 'lay' readers to help us develop our information materials by reviewing and commenting on drafts. You can be a patient, parent, family member or carer.

Take part in research projects

We're often asked to help researchers with patient involvement and we're often in need of patients, parents and carers to comment on guidelines. If you're interested in providing your experiences or have a keen eye for reading documents, get in touch.

Volunteer at an event

We're always looking for volunteers who can help at our in-person educational events - helping with registration or greeting/chatting with people. We're also forming a 'PKD Cheering Team' of volunteers around the UK who can go to fundraising events and help inspire fundraisers to go the extra mile.

Where relevant, full training and out-of-pocket expenses are provided.

Charity trusteeship

We're looking for new Trustees to join our Board, and we would particularly love to hear from people living with PKD, family members, partners and carers who understand first-hand the realities of this life-changing condition.

Contact us

If you feel you can help with the above or anything else, please complete this short form and we'll get in touch with you asap. 

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Vacancies

Vacancies

Become a Trustee of the PKD Charity

Help shape the future for everyone affected by Polycystic Kidney Disease (PKD).

We're looking for new Trustees to join our Board, and we would particularly love to hear from people living with PKD, family members, partners and carers who understand first-hand the realities of this life-changing condition.

Founded in 2000, we are the UK's only charity dedicated solely to improving the lives of people affected by polycystic kidney disease. We support an estimated 70,000 people and their families through support and information, awareness, research, campaigning and influencing.

This is an exciting time to join the PKD Charity. We have grown significantly in recent years and are ambitious about what comes next. We want people affected by PKD to have a strong voice in shaping our future at Board level.

Who are we looking for?

You don't need previous experience as a Trustee. We're looking for people who can bring lived experience, good judgement, fresh perspectives and a genuine commitment to making a difference.

We are particularly interested in attracting people with skills and experience in:

  • Income generation and fundraising
  • GP or primary care
  • Health economics and finance
  • Research
  • HR and employment law
  • Policies and procedures
  • Communications and marketing

We are interested in the combination of skills, experience and perspectives that each new Trustee could bring to our Board. 

Why become a Trustee?

This is an opportunity to use your experience to make a real difference — helping to shape the future of the UK's only charity dedicated solely to PKD and ensuring that the voices of people affected by PKD remain at the heart of our work.

We'll provide induction, support and relevant training to help you feel confident and effective in the role. 

This is a voluntary role, with reasonable expenses reimbursed in line with our policy.

Interested?

Download the Trustee Candidate Pack to find out more 

If you’d then like to apply, please send us:

  • A short CV
  • A short supporting statement telling us why you'd like to become a Trustee, your connection to PKD and what you could bring to the Board.

More information on the recruitment process is available in the candidate pack.

Closing date for applications 9am on Monday 23rd November

latest news

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PKD Charity Logo

PKD Charity Logo

Using the PKD Charity logo

Thank you so much for wishing to use our PKD Charity logo. 

With our prior approval, you can use our logo on websites, posters, presentations, email signatures, and all other communications materials.

Please email us with proofs of any materials using PKD Charity logos for approval.

Our logo guidelines are:

Making changes

We like our logo just how it is, so  please don’t alter or redraw it in any way.

Logo exclusion zone

Please leave space around the logo and keep it clear of any other graphics.

PKD Charity colours

Our core brand colours are a bold and lively purple and green.

Purple

  • Pantone: Purple C
  • CMYK: 40%, 85%, 0%, 0%
  • RGB: #A5439C (165, 67, 156)

Green

  • Pantone: 382 C

  • CMYK: 30%, 0%, 100%, 0%,

  • RGB: #C1D82C (193, 216, 44)

Applying our logo

The PKD Charity logo is a bright colour, so where possible add it on a white background.

Download our fundraising logo

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Transplant Anniversary

Transplant Anniversary

The anniversary of your transplant is a very special day; a time for reflection, joy and giving thanks to all those who’ve made this remarkable journey possible so far. Perhaps you want to pay tribute to your donor, praise your medical team, or mark the day with family and friends. And what better time to also help raise awareness of PKD or PLD.

Whether you’re a recipient, donor or know someone who has a kidney or liver transplant anniversary coming up, here are some ways to celebrate with us.

Give hope and help improve the lives of those affected by PKD by raising money and sharing your story:

Read more …Transplant Anniversary

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About us

About us

Founded in 2000, we’re the first and only UK charity solely dedicated to improving the lives of an estimated 70,000 individuals and their families affected by polycystic kidney disease (PKD) in the UK.

PKD is a range of life-threatening inherited conditions that can cause kidney failure and affect other organs in the body such as the liver, brain, heart and bowels. Most people with PKD live with an uncertain prognosis, intermittent pain and infections, and then have to undergo life-saving dialysis or transplant in their 50s. A few babies have a rare form of PKD which results in death during pregnancy or shortly after birth; the surviving children often have to have either a kidney or liver transplant before the age of 10.

We provide reliable, accredited information, advice and personalised support. We raise awareness of the burden of PKD, both clinical and psychosocial. We fund research aimed at understanding more about PKD and the discovery of therapies that will improve quality and longevity of life.

  • What we do

    Since 2000 we’ve been helping individuals and families with polycystic kidney disease (PKD) to live life as fully as possible by providing personal support, information, raising awareness and funding research.

    Read more

  • Our people

    We have a small team of employees who work remotely and are supported by a dedicated board of trustees. We are also privileged to have very loyal volunteers who give their time to help support others with PKD, raise funds and awareness of PKD.

    Read more

  • Volunteers

    We are privileged to have very loyal volunteers who give their time to help support others with PKD, join us at events, host local groups and meetups, proofread and get involved in research studies.

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  • Annual accounts

    We raise money for our activities from voluntary donations, grants from foundation trusts and corporate companies, and the fundraising activities of our supporters.

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  • Vacancies

    We have no vacancies at present.

    Read more

  • Fundraising promise

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

    Read more

  • PIF TICK

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

    Read more

  • Contact us

    Ring 03001111234, email us or complete the form to send us a message.

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PKD Charity is a Member of

Get in touch

Please contact us if you have a question or would like to chat to one of the team.

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Give in memory

Give in memory

Giving in memory enables you to celebrate someone’s life whilst also making a huge difference to the lives of people affected by polycystic kidney disease, helping to raise vital awareness and funding life-changing research into finding treatments and a cure for PKD.

There are a few different ways that you can give a gift in memory and celebrate the life of your loved one.

  • Make a donation

    If you would like to make a donation on behalf of a loved one, we have a number of ways you can do that on our ways to donate page. Alternatively, you can ring our Fundraising Manager on 07715 664687. 

    Donate Here

  • Set up a tribute page

    A Memory Giving Tribute page is a heartfelt way to honor a loved one. Easy to set up and share, it lets family and friends come together, leave messages, share memories, and contribute in their honor, keeping their legacy alive.

    Create a tribute page

  • Set up a celebration page

    A Visufund Celebration Page is a fun, personalized way to honor a loved one. Choose a theme that reflects their style, add photos and messages, creating a heartfelt tribute that keeps their memory alive.

    Create a celebration page

  • Take part in an event

    There is no greater way to honor someone than by taking part in an event and dedicating it to them. We have hundreds of events to choose from to dedicate to that special someone.

    Find your event

If you have any questions or would like to chat about supporting the charity in memory of a loved one, please get in touch with Rachel, our Fundraising Manager, who would be more than happy to talk you through any aspect of giving in memory. 

Email fundraising or call 07715 664687.

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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