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(3) In May, we hosted a parliamentary reception in Westminster with @VantiveHealth to shine a spotlight on the realities of living with #KidneyDisease. 15-year-old Charlie shared his powerful story about how kidney disease shaped his childhood. We were honoured to hear from Secretary of State for Health and Social Care, @wesstreeting, and were delighted to be joined by MPs, Peers, clinicians, academics, and #KidneyPatients.

(2) In March we hosted a drop-in event in the @ScotParl sponsored by Dame Jackie Baille MSP on World Kidney Day.  #KidneyPatients, clinicians and staff engaged MSPs on issues relating to kidney disease, organ donation, and the need for a #KidneyDisease action plan in Scotland @jackiebmsp @kidneydayUK

(7) In October we handed in an open letter to No.10 alongside @UKKidney, @kidneycareuk, @NKF_UK, and @PKDCharity. 13,000 signatures from across the kidney community, including patients and their loved ones, called for a national strategy on kidney disease #7MillionLives #KidneyDisease

(1) 2025 was a busy year for our policy and external affairs team. They started the year by hosting a parliamentary roundtable on health inequalities, co-chaired by kidney patient Fez Awan and our chief executive @cranford59. #KidneyPatient Daniel Newman movingly shared his personal story of living with #KidneyDisease. It launched a useful consensus on how we need to collectively take action to tackle #HealthInequalities in kidney disease

Wow, we are blown away by the support shown last night for our first ever Christmas Carol Concert. Held at the beautiful St Marylebone Parish Church, over 250 guests attended to kickstart the festivities with choirs from London Show Choir and London International Gospel Choir. Thank you to patient, Deborah Bakewell, longer-term supporter, Laura Plumptre, and ambassadors Danny Sebastian, Nina Nannar and Nina Wadia OBE, who gave a reading, and to Terrell Lewis and Kevanie Remekie for their powerful and emotional spoken word poem. A huge thank you to our sponsors Myndstream, Adtrak, Plutus. Wealth Management, Creative Triangle Limited, and Just Digital Limited whose support made this unforgettable evening possible. And finally, to you, our wonderful supporters, through your generosity, donations, and silent auction bids, we raised an incredible £25,000! Your kindness will make a real difference. Thank you for making our first Christmas Carol Concert a night to remember. Here’s to many more!

Great to attend @AstraZeneca’s report launch in Edinburgh today ‘Clinical Trial Recovery in Scotland’. Inspiring discussions on making Scotland a global hub for commercial trials, chaired by Alexander Stewart MSP with @neilcgray MSP and cross-party support. Fantastic to see kidney research highlighted! #ClinicalTrials #Innovation #Scotland #KidneyResearch #RenalCare

We’re delighted the Government is extending the #RareDiseasesFramework for another year. Our recent report ‘Collectively common: the devastating impact of rare kidney diseases in the UK’ found there are an estimated 160,000 people living with a #RareKidneyDisease in the UK. Many of them face delayed diagnosis and a lack of access to specialist care and treatment. We're using the report to campaign to change this and look forward to working alongside the Genetic Alliance. kidneyresearchuk.org/about-u…

We were proud to host the parliamentary launch of our new report on rare kidney diseases at a roundtable in the House of Commons this week. A huge thank you to @StuartAndrew MP for hosting and to our incredible speakers: Health Minister @zubirahmed, Dame June Raine, George Agathangelou from @ZSAssociates, @louise_oni, and kidney patients Kathryn and 15-year-old Morven for sharing their powerful stories. It was inspiring to see so much commitment to improving outcomes for the 160,000 people in the UK living with a rare kidney disease. Together, we’ll keep building momentum to make the case for: • Earlier diagnosis • Better access to treatments • Inclusion of children in clinical trials #KidneyDisease

In a landmark decision, the Scottish Medicines Consortium (SMC), has accepted mercaptamine (brand name Procysbi) for people in Scotland living with cystinosis, a rare disease affecting about one in every 100,000 to 200,000 newborn babies. The decision marks a pivotal moment for people – mainly children and young adults – living with a cystinosis and their families by introducing a long-awaited choice in primary treatment in Scotland for the first time. “𝐻𝑎𝑣𝑖𝑛𝑔 𝑎𝑐𝑐𝑒𝑠𝑠 𝑡𝑜 𝑡ℎ𝑖𝑠 𝑡𝑟𝑒𝑎𝑡𝑚𝑒𝑛𝑡 𝑐𝑜𝑢𝑙𝑑 𝑚𝑎𝑘𝑒 𝑎 𝑚𝑒𝑎𝑛𝑖𝑛𝑔f𝑢𝑙 𝑑𝑖ff𝑒𝑟𝑒𝑛𝑐𝑒, 𝑝𝑎𝑟𝑡𝑖𝑐𝑢𝑙𝑎𝑟𝑙𝑦 f𝑜𝑟 𝑐ℎ𝑖𝑙𝑑𝑟𝑒𝑛 𝑎𝑛𝑑 𝑡ℎ𝑒𝑖𝑟 𝑝𝑎𝑟𝑒𝑛𝑡𝑠. 𝑇ℎ𝑒 𝑡𝑤𝑖𝑐𝑒-𝑑𝑎𝑖𝑙𝑦 𝑑𝑜𝑠𝑖𝑛𝑔 𝑚𝑒𝑎𝑛𝑠 f𝑎𝑚𝑖𝑙𝑖𝑒𝑠 𝑛𝑜 𝑙𝑜𝑛𝑔𝑒𝑟 𝑛𝑒𝑒𝑑 𝑡𝑜 𝑤𝑎𝑘𝑒 𝑑𝑢𝑟𝑖𝑛𝑔 𝑡ℎ𝑒 𝑛𝑖𝑔ℎ𝑡, 𝑠𝑢𝑝𝑝𝑜𝑟𝑡𝑖𝑛𝑔 𝑎 𝑚𝑜𝑟𝑒 𝑐𝑜𝑛𝑠𝑖𝑠𝑡𝑒𝑛𝑡 𝑛𝑖𝑔ℎ𝑡’𝑠 𝑠𝑙𝑒𝑒𝑝. “𝑊𝑒 𝑏𝑒𝑙𝑖𝑒𝑣𝑒 𝑒𝑣𝑒𝑟𝑦𝑜𝑛𝑒 𝑙𝑖𝑣𝑖𝑛𝑔 𝑤𝑖𝑡ℎ 𝑐𝑦𝑠𝑡𝑖𝑛𝑜𝑠𝑖𝑠 𝑠ℎ𝑜𝑢𝑙𝑑 ℎ𝑎𝑣𝑒 𝑎𝑐𝑐𝑒𝑠𝑠 𝑡𝑜 𝑡ℎ𝑒 𝑚𝑜𝑠𝑡 𝑒ff𝑒𝑐𝑡𝑖𝑣𝑒 𝑡𝑟𝑒𝑎𝑡𝑚𝑒𝑛𝑡𝑠 𝑎𝑣𝑎𝑖𝑙𝑎𝑏𝑙𝑒 𝑡𝑜 𝑝𝑟𝑒𝑣𝑒𝑛𝑡 𝑡ℎ𝑒𝑚 f𝑟𝑜𝑚 𝑑𝑒𝑣𝑒𝑙𝑜𝑝𝑖𝑛𝑔 𝑘𝑖𝑑𝑛𝑒𝑦 𝑑𝑖𝑠𝑒𝑎𝑠𝑒 𝑎𝑛𝑑 𝑒𝑣𝑒𝑛𝑡𝑢𝑎𝑙𝑙𝑦 𝑛𝑒𝑒𝑑𝑖𝑛𝑔 𝑑𝑖𝑎𝑙𝑦𝑠𝑖𝑠 𝑜𝑟 𝑎 𝑘𝑖𝑑𝑛𝑒𝑦 𝑡𝑟𝑎𝑛𝑠𝑝𝑙𝑎𝑛𝑡.” - 𝗔𝗹𝗶𝘀𝗼𝗻 𝗥𝗮𝗶𝗹𝘁𝗼𝗻, director of policy and public affairs. We partnered with the Cystinosis Foundation UK and Metabolic Support UK in contributing to the SMC consultation process. Read more here: bit.ly/443ESj8

Can specialised eye scans be used to monitor kidney disease progression? Currently, monitoring kidney health often relies on blood tests and, in some cases, biopsies, both of which can be invasive and uncomfortable. In December 2023 we shared the promising results from a study by Professors Neeraj Dhaun (Bean), Matt Bailey, and the team at the University of Edinburgh, who showed that specialised eye scans, called optical coherence tomography (OCT) could be used to monitor kidney disease progression. With further funding, the team are now working on experiments in the lab to see if there were changes to the eye that happened following acute kidney injury (AKI), and whether the eye shows improvement when kidney function improves due to treatment. “This is an important next step to validate our methodology and demonstrate its effectiveness in models of kidney disease, paving the way for potential clinical applications.” Bean. Read more: bit.ly/47J8IL2

We are excited to have appointed Dr David Crosby as our new chief research officer, finalising our strengthened executive team as we move ahead with our ambitious plans to transform kidney care in the UK. David joins chief income and engagement officer, Lucy Sreeves, and recently appointed Mike Bishop, our first chief operating officer, in reporting directly into our CEO Sandra Currie. These new appointments are pivotal as we move into the next phase of our ten-year strategy in which the charity is expanding to combat the growing crisis in kidney care. With kidney disease affecting around one in ten people in the UK, our focus on impact, driving research to transform patients' lives, is more vital than ever. “𝐾𝑖𝑑𝑛𝑒𝑦 𝑑𝑖𝑠𝑒𝑎𝑠𝑒 𝑖𝑠 𝑎𝑛 𝑜𝑣𝑒𝑟𝑤ℎ𝑒𝑙𝑚𝑖𝑛𝑔𝑙𝑦 𝑢𝑛𝑚𝑒𝑡 𝑛𝑒𝑒𝑑. 𝑇𝑜𝑜 𝑜f𝑡𝑒𝑛, 𝑝𝑟𝑜𝑔𝑟𝑒𝑠𝑠 𝑙𝑎𝑔𝑠 𝑏𝑒ℎ𝑖𝑛𝑑 𝑜𝑡ℎ𝑒𝑟 𝑎𝑟𝑒𝑎𝑠 𝑜f ℎ𝑒𝑎𝑙𝑡ℎ 𝑟𝑒𝑠𝑒𝑎𝑟𝑐ℎ. 𝐼 𝑤𝑎𝑛𝑡 𝑡𝑜 ℎ𝑒𝑙𝑝 𝑐ℎ𝑎𝑛𝑔𝑒 𝑡ℎ𝑎𝑡 – 𝑏𝑢𝑖𝑙𝑑𝑖𝑛𝑔 𝑜𝑛 𝐾𝑖𝑑𝑛𝑒𝑦 𝑅𝑒𝑠𝑒𝑎𝑟𝑐ℎ 𝑈𝐾’𝑠 𝑠𝑡𝑟𝑜𝑛𝑔 f𝑜𝑢𝑛𝑑𝑎𝑡𝑖𝑜𝑛𝑠 𝑡𝑜 𝑏𝑟𝑖𝑛𝑔 𝑛𝑒𝑤 𝑡𝑟𝑒𝑎𝑡𝑚𝑒𝑛𝑡𝑠 𝑎𝑛𝑑 𝑑𝑖𝑎𝑔𝑛𝑜𝑠𝑡𝑖𝑐𝑠 𝑡𝑜 𝑝𝑎𝑡𝑖𝑒𝑛𝑡𝑠 f𝑎𝑠𝑡𝑒𝑟.” - 𝗗𝗿 𝗗𝗮𝘃𝗶𝗱 𝗖𝗿𝗼𝘀𝗯𝘆 Read more: bit.ly/43en9p0

A big thank you to Sam Carling MP @sam_carling_ for meeting us in our Peterborough office to discuss rare kidney diseases and the challenges of the 160,000 people in the UK living with these conditions. We look forward to working with Sam to improve access to diagnostic testing and ensuring children can take part in clinical trials where safe and appropriate.

It was a busy few days for our policy and external affairs team in Liverpool last week at the Labour Party Conference. They spoke at a fringe event, attended receptions, met industry and charity partners and talked to Ministers and MPs about the need for a greater focus on kidney disease. That’s why we’re calling on the Government to publish a modern service framework to transform how we address the growing burden of kidney disease on individuals, the NHS, the economy and the environment.

We were delighted to hand in our joint open letter yesterday to No. 10 Downing Street, urgently calling for a national kidney disease strategy. After the hand in, we heard from patients, clinicians, @SmeetaSinha, Katie Vinen, and Jo White MP at the All Party Parliamentary Kidney Group about why the government needs to prioritise kidney disease now through a national strategy. The letter, which was launched back in July, received over 13,000 signatures from the kidney community. Thank you to all of the organisations involved in this joint campaign - @kidneycareuk, @NKF_UK, @PKDCharity and @UKKidney.

We are looking to recruit some members to our new policy and campaigns panel and now is your chance to apply! Our policy and external affairs team are responsible for campaigning and raising awareness of kidney disease with government and policy makers in England, Scotland, Wales and Northern Ireland. They engage with patients and carers to gain insights and to better advocate for patients. Our policy and campaigns panel will add to this work by supporting the team’s activity with their lived experience. What will being a member of the panel involve? • Attending quarterly panel meetings to offer your insight and lived experience • You may be invited to represent the charity and the policy and campaigns panel at selected parliamentary events and meetings throughout the year • Engaging with our internal policy and external affairs team to increase awareness of the importance of patient and carer involvement in policy and campaigning activity • You may be asked to use your experience of kidney disease to comment on policy consultations To find out more about the role, you can read the full role description here: bit.ly/3VJL8br If you are interested in joining the policy and campaigns panel, please email your expression of interest to 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀@𝗸𝗶𝗱𝗻𝗲𝘆𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵𝘂𝗸.𝗼𝗿𝗴 by 𝗙𝗿𝗶𝗱𝗮𝘆 𝟭𝟬 𝗢𝗰𝘁𝗼𝗯𝗲𝗿 𝟮𝟬𝟮𝟱. In your expression of interest, please include information on your connection to kidney disease, any relevant experience of sitting on groups or committees, any examples of involvement in policy and campaigning activity (not restricted to kidney specific), and why you would like to be part of the panel. We will be some holding interviews mid-October with the patient involvement manager and the policy and public affairs manager.