In November 2026, we will be holding a drop in parliamentary event championing children’s kidney care looking at the challenges and opportunities to improving support for children and their families.

We will shine a spotlight on the lived experiences of families navigating the paediatric kidney disease and transplant care pathway and recruit a new group of cross-party parliamentarians to advocate and champion children and families affected by kidney disease and transplantation.

Responding to your concerns

In February 2026, the Department of Health and Care announced new funding for transport costs for families of children living with cancer. Several families contacted us, supportive of this decision but also saddened that their children’s lives and needs had not been given the same consideration.

We want to secure Government recognition of the travel costs faced by families affected by paediatric kidney disease and transplantation and make the case for equivalent support.

How can I help champion children's kidney care?

If you are a parent or carer of a child with kidney disease, please complete our anonymous survey – or share it with someone who may be interested. Your experiences will help show the social, emotional and financial impact of childhood kidney disease on the whole family.

The survey takes around 12 minutes and closes on 25 October 2026. Every response will help ensure that decision-makers hear directly from families with real experience.

We also have a survey open to young adults, inviting them to reflect on their experiences of kidney disease in childhood. We will use their experiences and feedback to help shape our calls for better support for children with kidney disease and their families today.

What we will do with the information?

We will present the results of our survey in parliament and in a report to show the true cost of childhood kidney disease and call for equity in children’s kidney care and greater recognition of families’ needs. It is vital that policymakers hear from people with lived experience.