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Patient Involvement & Engagement Manager

Help Change the Future of Polycystic Kidney Disease Research

Remote (UK-based) | Part-time (22.5 hours / 3 days per week)
Salary: £33,000–£35,000 FTE pro rata (£19,800–£21,000 actual)

The PKD Charity is looking for an exceptional communicator and relationship-builder to lead patient involvement in groundbreaking PKD research.

This is not a standard engagement role.

You will help ensure that the voices, experiences and priorities of people living with polycystic kidney disease directly influence research, clinical studies and future healthcare decisions across the UK.

PKD affects around 70,000 people in the UK. It causes kidney failure, lifelong health complications and reduced life expectancy. There is currently no cure.

We believe research is stronger when patients are genuinely heard — not consulted as an afterthought.

That’s where you come in.

The Opportunity

As our Patient & Public Involvement and Engagement (PPIE) Manager, you’ll lead and shape involvement activity through the PKD Research Hub, working alongside patients, researchers, clinicians and partners to make research more inclusive, meaningful and impactful.

You’ll:

  • Lead and support our Patient Involvement Panel
  • Facilitate high-quality patient engagement and focus groups
  • Work directly with researchers and industry partners
  • Champion authentic lived experience in research decision-making
  • Support awareness of clinical studies and research opportunities
  • Create compelling patient stories and engagement content
  • Help influence the future direction of PKD research in the UK

We’re Looking For Someone Who:

  • Understands the power of meaningful patient involvement
  • Can confidently manage relationships with patients, researchers and stakeholders
  • Has experience in PPIE, health research, healthcare or the charity sector
  • Is an excellent facilitator and communicator
  • Brings empathy, professionalism and initiative
  • Wants to make a tangible difference every single day

Experience in rare disease, kidney health or long-term conditions is welcomed but not essential.

Why Join Us?

At the PKD Charity, you’ll join a passionate national charity working to improve lives through:

  • Research
  • Advocacy
  • Support
  • Education
  • Patient voice

This is a rare opportunity to shape a growing area of work with real national impact — while working flexibly as part of a supportive, mission-driven team.

What We Offer

✔ Fully remote working
✔ Flexible part-time hours (3 days / 22.5 hrs)
✔ 25 days annual leave pro rata + bank holidays
✔ Pension scheme
✔ Meaningful, purpose-driven work
✔ Opportunity to influence national research activity

Apply Now

To apply, please send your CV and cover letter to [email protected]

Deadline 9am Monday 1st June. Interviews will provisionally be held online on Wednesday 10th June. However we will monitor applications on a rolling basis and may approach for interview at an earlier date. If we find the right candidate we may close the recruitment campaign at an earlier time, so we encourage you to get your applications in at the earliest opportunity.

For more information and a full job description, see the link below.

Read more …Vacancies

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

Read more …PKD Charity Logo

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

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.

    Read more

  • 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.

    Read more

  • 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.

    Read more

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.

Read more …About us

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.

Read more …Give in memory

Other ways to support us

Other ways to support us

There are so many ways you can help raise funds and awareness for PKD Charity. Whether it’s through everyday shopping, hosting an event, or simply spreading the word, your support makes a real impact.

We have plenty of fun and inspiring ideas to help you fundraise in a way that works for you. Thanks to our amazing fundraisers, we can continue providing vital support to those affected by polycystic kidney disease.

  • 5k a day in October

    Challenge yourself to complete 5k every day throughout October for PKD. Walk with the dog, with friends or on your own. Your challenge your way. 

    Sign up now!

  • Easyfundraising

    Easyfundraising lets you raise free donations for PKD Charity every time you shop online with thousands of retailers. It’s completely free to use and doesn’t cost you anything extra. Easyfundraising makes it simple to turn everyday shopping into contributions.

    Sign up now!

  • PKD Lottery

    Join the PKD Lottery for just £1 a week and be in with a chance to win one of four prizes, including the top prize of £25,000. Every entry helps fund vital research and support for those living with Polycystic Kidney Disease across the UK. Best of all—you could win big!

    Play now!

  • Facebook fundraiser

    Host a Facebook fundraiser for the PKD Charity—whether it’s for your birthday, anniversary, or any special occasion. It’s quick and easy to set up, simple to share with friends, and a great way to support those affected by Polycystic Kidney Disease.

    Sign up now!

  • Host your own event

    We wouldn’t be able to continue to provide support to people affected by polycystic kidney disease without our wonderful fundraisers. If you are planning an event, get in touch with the fundraising team to see how they can support you. 

    Get in touch!

  • PKD Shop

    Our offers a range of branded items, including wristbands, pin badges and pens as well as T shirts and running tops.

    Shop Now!

  • Recycle for Good

    Whether it is old notes from a holiday, odd earings or used/out of date stamps. You can turn all of these into donations quickly and easily.

    Find out more

  • Christmas Shop

    Get Christmas ready with our wonderful selection of Christmas cards and accessories. Every purchase raises festive cheer and funds for PKD Charity.

    Shop now

  • Summer Prize Draw

    Get your tickets now for the PKD Summer Prize draw and you could win one of 5 amazing prizes! 

    Find out more

Read more …Other ways to support us

Play the Genetic Lottery

Play our lottery and be in with a chance to win big! 

Every year, PKD Charity supports thousands of people affected by PKD and funds vital research into finding life-changing treatments for polycystic kidney disease. By playing the Genetic Lottery you will be helping support PKD Charity’s three core aims as we work to improve the lives of everyone affected by PKD; give hope for the future and make PKD irrelevant and ultimately curable.

It's easy to play

  1. You can play for as little as £1 per week. 50p of every £1 you play goes straight to the PKD Charity. (A minimum of 50% of the total lottery proceeds go to supporting the work carried out by PKD Charity, 18.4% on prizes and 31.6% on expenses and administration of the lottery.)

  2. You will be allocated with a six-digit Lottery number for each entry. You can buy more than one number.

  3. Winners have to match 3, 4, 5 or all 6 digits of the winning number in the correct place in the sequence. Match 3 numbers and win 5 entries into the next draw, match four numbers to win £25, match five numbers to win £1,000 and match six numbers to win £25,000.

  4. Every Friday, the lucky winners are selected at random and prize cheques issued and posted directly to you - so there is no need for you to claim.

Click here to play the Genetic Lottery


FAQs

For FAQs about the Genetic Lottery operated by Unity please click here.

Players must be resident in Great Britain and over the age of 18.

PKD Charity is licensed and regulated in Great Britain by Hackney Council account number: SSL-2024/005

Read more …Play the Genetic Lottery

Recycle for Charity

Recycle your unwanted goods for Charity

Recycle your old and unwanted items and turn them into donations for PKD Charity.

You can donate broken or unwanted jewellery to help raise money for the charity. This includes gold, silver, costume jewellery, watches, odd earrings, broken chains, or items with missing stones. Even damaged pieces can still make a difference.

You can also donate unwanted banknotes from any country and any age, including obsolete pre-euro notes.

Our partners at Recycling for Good Causes will reuse and recycle the jewellery and banknotes. The proceeds will be donated to PKD Charity, helping to raise vital funds while also saving precious raw materials.

Donating costs you nothing, but it can make a real difference.

• Any jewellery – gold, silver, costume jewellery, watches, broken and damaged items (like odd earrings, snapped chains or items with missing stones).

• You can donate any unwanted banknotes from ANY country of any age, so all of those obsolete pre-euro notes are a perfect start!

If you would like to send your jewellery and banknote recycling to us, simply use your own envelope or jiffy bag (No bigger than A5 in size) and post free of charge by printing out the freepost label below and attaching to your envelope.

Download the Freepost address

*Please do not send coins or stamps to the freepost address as the postage costs will far outweigh your donation. *

To recycle your stamps

You can now donate your used stamps to help raise much-needed funds for PKD Charity. All kinds of stamps are welcome, whether they are on or off paper.

Simply cut or carefully tear the postage stamp from the used envelope, taking care not to damage it. Once you have collected a number of stamps, place them in an envelope and ensure you apply the correct postage before sending them to:

PKD Charity
PO Box 16992
Sutton Coldfield
B73 9YA

(Please remember to apply postage.)

For larger quantities of stamps weighing over 10kg (approximately two buckets full), Recycling for Good Causes can arrange a collection.

Your donated stamps can help make a real difference, thank you for your support.

You can find out more information about Recycling for Good and the service on their website

Read more …Recycle for Charity

Corporate Support

Corporate Support

Your company can help support people affected by polycystic kidney disease, and fund life-changing treatments into finding treatments and a cure. 

Corporate support can come in many forms, from donations, to a Charity of the Year partnership, employee fundraising, Payroll Giving or by supporting our fundraising activity through sponsorship or gifts in kind.

  • Make a donation

    Your company can make a one-off donation to PKD Charity or set up a regular gift to help support people affected by polycystic kidney disease. Make a donation online today. 

    If you would prefer to donate via bank transfer or by sending us a cheque, all the information you will need to do this is here.

  • Charity of the Year

    Could you nominate PKD Charity to be your employers' Charity of the Year?  

    We will work closely with you to not only help meet your business and corporate social responsibility objectives but also help bring your staff together to support us and raise money to support people affected by PKD.

  • Take part in an event or organise your own

    There are lots of fun ways for you and your colleagues to come together to raise money to support our work. If you’d like to take on a team challenge like a trek up Ben Nevis, a Tough Mudder or a running event. Get in touch! 

    If a physical challenge isn’t what you and your team are looking for then you could organise your own event, like an office cake sale, test your colleagues in an Apprentice-style challenge or host an event like a charity ball or golf day.  

  • Matched Funding

    Offering matched funding can be a great incentive for staff to raise money themselves. We also can work with you to create a calendar of events that staff can get involved in to fundraise for us.

  • Payroll Giving

    Payroll Giving, also known as Give As You Earn, is a simple way to make regular donations straight from your salary. It is one of the most tax-effective ways of giving to charity as it comes out of your gross pay (before tax) so it will cost you at least 25% less. Ask your company if they have a payroll giving scheme and nominate PKD Charity as your chosen charity.

  • Sponsor an Event

    Could your company support us by sponsoring a PKD Charity event? We host events throughout the year and sponsorship could be a great way to show your commitment to our cause as well as help your company raise brand awareness across our community.

  • Gifts in Kind

    As well as supporting us with donations and fundraising, we always appreciate donations of products and free services as these ensure that more funds can be allocated directly towards supporting people affected by PKD and funding research. If this is something that you could support with then we'd love to hear from you.

More information

If your company are interested in working with us to support people affected by PKD, please get in touch, we’d love to hear from you. 

Email our Fundraising Manager at [email protected] or call 07715 664687.

 

Read more …Corporate Support

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