How are families involved in infoKID?

Before we started developing infoKID, we spoke with families of children with kidney conditions to find out what information they needed to know. We hosted focus groups at two children’s hospitals with parents, carers and young people. The feedback they provided helped inform how we developed infoKID.

Parents, carers and young people also read each topic to help make sure it is clear and answers what they want to know.

A huge thank you to the families who helped us develop infoKID!

Download a summary report of our focus groups

Your stories: read the experiences of families living with kidney disease

  • Fundraising, Haemodialysis, Living with kidney disease, Rare renal, Travelling and CKD

    Charlie's story: living with nephronophthisis

    Twelve-year-old #KidneyWarrior Charlie won't let renal failure stop him from living an active lifestyle and raising funds to support the kidney community.

  • Families, Living with kidney disease, Stage 5 CKD (Kidney failure), Transplant

    Joe's story: living with kidney disease

    From birth, Joe’s mum knew there were going to be difficulties. But Joe was a fighter, and at 11 years old he has had two kidney transplants, the second being donated from his dad.

  • Families, Kidney conditions and diagnosis, Living with kidney disease, Rare renal, Stage 5 CKD (Kidney failure)

    Layla's story: living with aHUS

    Layla was diagnosed with aHUS, a rare renal condition. When she is not visiting the Great North Children's Hospital for infusions, she is riding bikes and winning dance competitions.

  • Families, Haemodialysis, Kidney conditions and diagnosis, Living with kidney disease, Rare renal

    Kitty's story: living with nephronophthisis

    For Kitty, a diagnosis with a rare kidney disease meant emergency dialysis and missing out on school. But one donated kidney from her uncle later, Kitty is back living her 'old normal' life.

  • Families, Living with kidney disease, Rare renal

    Rumer's story: living with Bartter syndrome

    Rumer has lived with with the rare condition Bartter syndrome her entire life. Mum Amy explains how the disease has affected both of them, from holidaying to making up pillboxes.

  • Families, Living with kidney disease, Rare renal, Stage 5 CKD (Kidney failure), Transplant

    Clodagh and Faith's story: living with kidney disease

    Clodagh and Faith are cousins who were both born with congenital nephrotic syndrome, who have each had a kidney transplant, with kidneys donated from family members.