What is a rare renal condition?
An introduction to living with a rare kidney condition – and what you can expect from treatment.
Living with a rare renal condition
Living with a rare condition
Having a rare disease, or being told your child has one, can affect your life in lots of unique ways.
Community support for rare kidney conditions
Feel less isolated, access the latest information and share your lived experience.
Rare renal conditions explained
Rare kidney disease can be hard to diagnose, and patient information can be difficult to find if the number of people living with the condition is small. Kidney Care UK offers medically-reviewed information about rare conditions and links to more detailed patient support.
Look through an introduction to 20 rare kidney diseases, with links to further information and specific patient support groups for further advice.
Rare renal conditions explainedLiving with rare renal disease: your stories
Living with aHUS: Sarah's story
Sarah was diagnosed with aHUS as a toddler. From fluid restrictions and failed transplants to the importance of support networks, she shares her story.
Living with nephrotic syndrome: Kieran's story
Growing up with a rare kidney condition was difficult, but Kieran explains how the Young Adult Kidney Group community has supported him.
Living with vasculitis: Stewart's story
Being diagnosed with vasculitis has affected everything in Stewart's life, from his eyesight to his memory. But he never lets the bad days overwhelm the good.
"Connecting with other families has been amazing"
From balancing a rare renal disease with work and relationships to how to access the support available, Hannah and Susie from Alport UK share their advice.
FREE specialist kidney counselling
Our Counselling Service offers FREE expert support to kidney patients and their families.
Dealing with a rare renal diagnosis as a parent
Rumer and Amy: living with Bartter syndrome
Rumer has lived with Bartter syndrome, a rare potassium-wasting disease, her entire life.
Layla and Andrew: living with aHUS
An aHUS diagnosis was a shock, but Layla now receives treatment and is enjoying dancing again.
Kitty and Roz: living with nephronophthisis
Kitty's kidney condition is so rare that some health professionals have never heard of it.
This webpage has been developed by Kidney Care UK and was funded as a sponsorship by Alexion, Astra Zeneca Rare Disease. All editorial control has been retained by Kidney Care UK.
Kidney disease resources for parents and families
infoKID is an information resource about kidney conditions in babies, children and young people, created in partnership with the British Association for Paediatric Nephrology.