PKD Charity UK

Seeking a Cure for Polycystic Kidney Disease. UK charity. Supporting patients, generating awareness, fundraising for research #ADPKD #ARPKD #polycystickidneys

[PKD Charity UK @PKDCharity]

A new chapter in PKD research

The first ever Tess Harris Fellowship has been awarded to Dr Christopher Pieri from University College London.

Funded through the PKD Partnership our collaboration with Kidney Research UK, the £350,000 fellowship will support research into why PKD progresses differently from one person to another.

By bringing together genetic and clinical data, Christopher and his team hope to better understand who may be at greater risk of faster disease progression and support more personalised care.

For families affected by PKD, uncertainty about what the future may hold can be one of the hardest parts of living with the condition. We hope this research will help provide clearer answers.

The fellowship was created in memory of Tess Harris, who spent more than 20 years championing PKD research and the voices of people affected by PKD.

Read the full story: https://t.co/8WTQ1LFOIY

[PKD Charity UK @PKDCharity]

Great to be at the NKF Annual Event 2026 on Saturday, joining healthcare professionals, patients and Kidney Patient Associations from across the UK.

There was a packed programme covering everything from lived experiences of kidney disease and transplantation to getting the most from your dialysis experience.

A big thank you to the @NKF_UK for bringing everyone together, and to everyone who came to chat to us, find out more about PKD and hear about the work we do! 💜

[PKD Charity UK @PKDCharity]

Looking to connect with others living with PKD? Join our October PKD Connect groups in Cardiff, Derbyshire, Dorset, Newcastle, Norfolk & Warwickshire. 👉 Find your local group & register: https://t.co/pqKhiCZrw8

[PKD Charity UK @PKDCharity]

NHS Blood and Transplant (NHSBT) is reviewing how donor livers are offered to people waiting for a transplant, with ADPKD specifically identified as a group requiring consideration.

If you have PKD and an interest in liver transplantation, join the first patient and public webinar to hear about the changes being considered and share your views.

📅 Thursday 1 October
🕓 4pm
👉 Register: https://t.co/5yg6Ncf0z1

[PKD Charity UK @PKDCharity]

For someone waiting for a transplant, “the call” can change everything. After months or years of waiting...Disbelief. Fear. Gratitude. Adrenaline.

For a recipient, it’s a moment they’ll never forget. For a living donor, it’s the moment you know you’re about to give someone an extraordinary gift.

For deceased donors and their families, it’s a life-changing gift made at an incredibly difficult time. One decision can make an extraordinary difference. 💜

Learn more. Make your wishes known:
https://t.co/gvcaRgU23n

[PKD Charity UK @PKDCharity]

Could a parent's diet be linked to PKD severity in their child? An early laboratory study gets underway with funding from the PKD Partnership.
Read more: https://t.co/W5l2mhjicM
@Kidney_Research @PKDFoundation
#PKDCharity #PKDPartnership #KidneyResearch

[PKD Charity UK @PKDCharity]

Every donation can make a life-changing difference. 💜

More than 7,200 people in the UK are currently waiting for a kidney transplant, including children. And the number waiting continues to grow.

Take two minutes to confirm your organ donation decision and, just as importantly, talk to your family about what you want. When your family knows your wishes, they’re far more likely to support them.

👉 https://t.co/ZxekriqF5z

[PKD Charity UK @PKDCharity]

A huge thank you to our host, Dr Andy Stewart (AKA Dr Salt!), our excellent panel of speakers and, of course, all the PKD families who came along, listened, shared and asked some great questions at Saturday’s PKD Information & Support Day in Cambridge.

It was a bit of a squeeze following a last-minute venue change, but we managed it – and it was fantastic to see such a great turnout!

Thanks also to the team at Holiday Inn Cambridge for looking after us so well.

📍 Next stop: Preston!
Join us on 21 November 2026 if you’re in Lancashire, Cumbria or nearby.
👉 Register here:https://t.co/N7HWI4YBXG

[PKD Charity UK @PKDCharity]

2 minutes could save up to 9 lives. ❤️

The UK transplant waiting list is at an all-time high, with over 8,500 people waiting. Someone dies every day waiting for a transplant.

Check or update your organ donation decision via the NHS App or https://t.co/ZxekriqF5z.

It’s the best thing you’ll do today!

[PKD Charity UK @PKDCharity]

🎉 A huge thank you to everyone who took part in the PKD Fun 5K! 🎉

On Saturday 5 September, you got out there, pulled on your PKD T-shirts and took on your 5K your way! 👟💜

But it wasn’t just about the kilometers covered, you were also helping to spread awareness of Polycystic Kidney Disease (PKD) and start conversations about a condition that many people may never have heard of.

By wearing your PKD T-shirt and taking part, you helped shine a light on PKD and the huge impact it can have on everyday life for so many people.

We’ve got some fantastic photos from the day on our website, and we’d love to add even more!

If you took part in the Fun 5K but haven’t sent us your photo yet, email it to [email protected] and we’ll get you added to the Wall of Fame.
https://t.co/fLInMVtalA

[PKD Charity UK @PKDCharity]

🔍PKD Charity CEO Alison Taylor and Professor Richard Sandford, Emeritus Professor of Renal Genetics and Vice-Chair of the PKD Partnership, at the @Kidney_Research Driving Discoveries 2026 conference in Manchester.

Taking place 16–17 September, the two-day conference brings together the kidney research community to share work, collaborate and hear about the latest developments in renal medicine.

It’s a busy week for the PKD team, with our Cambridge Information Day coming up this Saturday, where Professor Sandford will be one of our guest speakers.

[PKD Charity UK @PKDCharity]

Interested in living kidney donation?

Join our Zoom Q&A with living donor coordinator Caroline Basarab-Horwath to learn about the process and what to expect.

🗓️ Mon 28 Sept | 6:30–7:30pm
Register free 👉 https://t.co/216zqCPMGy

#PKD #KidneyDonation

[PKD Charity UK @PKDCharity]

Coming up next week - Have your say on what needs to change and what should be prioritised in a new national kidney disease strategy?

Join one of our upcoming free online listening events and share your views:
22 September | 18:00–20:00
23 September | 12:00–14:00
Register 👉 https://t.co/2FmyhgCj5B

[PKD Charity UK @PKDCharity]

The National Kidney Patient Survey (formerly called PREM) is now open!

💬 In 2025, 7,300+ patients shared their experiences of kidney care, highlighting what matters most in day-to-day care and providing valuable insight to support meaningful improvements.

🗣️ Click the link to take part and have your voice heard 👉https://t.co/3ol9g5ybaC

[PKD Charity UK @PKDCharity]

Turn your steps into sponsorship and support PKD Charity this October, by setting yourself the goal of walking 5K a day.

There are lots of ways you could do it:

🚶‍♀️ Lunchtime walk to break up your day

🐕‍🦺 Get the dog involved for walkies

🚸 Walk the school run

You can download our helpful activity tracker to help you keep tabs on how far you have done. So if you don't have time to do it all in one go, you can split it up throughout the day. It really is up to you, but the important thing is to get moving!

To take part, all you need to do is set up a JustGiving page and wait for October 1.
Find out more and sign up on our website.
https://t.co/byoED8A5vE

[PKD Charity UK @PKDCharity]

Whatever PKD means for you, our free PIF TICK-accredited information and resources provide clear, reliable guidance at every stage — while also supporting renal healthcare professionals to provide the best possible care.

From diagnosis to treatment, dialysis, nephrectomy or transplant, we’re here with trusted information, support and a community that understands PKD.  
https://t.co/bPsYJBOIjd

#PKDAwarenessWeek #BePKDAware #PKD