Rare kidney conditions

Rare kidney conditions affect around 70 in 100,000 people. Nearly all children with end-stage CKD have a rare disease. For at least 3 in 5 children and 1 in 9 adults with end-stage kidney disease, kidney failure is due to rare disease.

  • Rare renal conditions: an overview

    Whether you or your child have recently been diagnosed with a rare kidney disease, or you’ve been living with one for a while and want to understand more about it, this article offers an introduction to living with a rare kidney condition – and what you can expect from treatment.

  • Living with a rare condition

    Living with any long-term condition can be challenging, but having a rare disease – or being told your child has one – can feel very isolating, and may have a big impact on your emotional wellbeing. But you’re not alone, and there are lots of steps you can take to help yourself and your family.

  • Community support for rare kidney conditions

    If you are living with a rare condition, building a community around yourself can help you feel less isolated, access the latest information and share your lived experience to give hope to others.

Rare conditions

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. Read on for an overview of 20 rare renal conditions and links to more detailed patient support.
More information about rare kidney conditions

Living with rare renal disease: your stories

  • Living with kidney disease, Medication, Rare renal, Transplant

    Sarah's story: living with aHUS

    Sarah was diagnosed with aHUS when she was less than two years old. From failed transplants to the importance of support networks, Sarah talks about her experience of kidney disease.

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

    Kieran's story: living with nephrotic syndrome

    Kieran talks about how living with a rare renal condition meant getting stared at by children, and how the Young Adult Kidney Group has helped him get into a better place.

  • Families, Living with kidney disease, Rare renal

    Stewart's story: living with vasculitis

    Stewart's diagnosis of vasculitis has affected everything in his life, but he doesn't let the bad days overwhelm the good. After all, his granddaughter has to make someone laugh.

Living with a rare kidney condition: your stories

  • Fundraising, Living with kidney disease, Rare renal

    John's story: living with FSGS

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

    Charlie's story: living with nephronophthisis

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

    Heidi's story: living with aHUS

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

    Baby Heidi's story: living with kidney disease
Read more

"As someone whose daughter has Alport syndrome, it has been amazing connecting with other families."

From the challenges of balancing a rare renal disease with work and relationships, to the support available for people living with Alport syndrome, Hannah Russell and Susie Gear from the charity Alport UK share their experiences.
Living with Alport syndrome support

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.

infoKID website

Dealing with a rare renal diagnosis as a parent

  • 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, 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.

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.