KIDNEY RESEARCH UK has launched a new dedicated online forum specially created to give people living with kidney disease and the families and carers who support them a safe and supportive space to talk, learn from each other and share experiences.
Shaped with help from Welsh patients, the forum offers a dedicated community space for the more than 377,000 people in Wales thought to be living with kidney disease.
Free to use, the new forum, called Kidney Community, creates a single, safe space where people can connect with others who understand their experiences, ask questions, share practical advice and find support, no matter what stage of the kidney disease journey they are at.
Kidney Community is open to kidney patients at all stages of the disease, people with a higher risk of developing it, and anyone affected by a diagnosis in their family or friendship groups.
The forum will be continually supported by Kidney Research UK’s team, helping to ensure discussions are informed, respectful and grounded in trusted information. It has been co-developed with kidney patients and carers to ensure it reflects real needs, concerns and priorities.
Darren Daniel from Ammanford in Southwest Wales helped with the forum’s development. Diagnosed with kidney disease in 2017, Darren has used social media, including TikTok, to raise awareness of kidney health and the realities of living with long-term illness. His experience of connecting with others helped inform the development of the forum.
Darren said: “When I started sharing my kidney journey online, I saw just how many people were desperate for somewhere to talk honestly about what they were going through.
“Helping shape this forum felt like a natural next step – making sure it’s real, accessible and driven by the questions people actually ask, not medical jargon.”
“This forum takes that sense of community and gives it a safe home, backed by Kidney Research UK. It means people don’t have to scroll endlessly or rely on misinformation.
“Whether you’re newly diagnosed or years into treatment, there’s power in knowing others understand your day-to-day reality, and that support is only a conversation away.”
Sandra Currie, chief executive of Kidney Research UK, said: “Many people affected by kidney disease tell us they feel unsure where to turn for support.
This forum brings“ patients and carers together in one place, so they can feel heard as part of a community, with access to information and shared experience at every stage of kidney disease.
“We are providing a safe, welcoming space where every question and every story matters.”
The launch builds on Kidney Research UK’s long-standing commitment to ensuring the voices of patients and families help shape research, services and support. Existing supporters, volunteers and members of the charity’s Kidney Voices for Research network were among the first invited to join.
The forum is now live and free to access on the charity’s ‘Welcome to Kidney Community!’ webpage.
