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About us

If you are a parent or carer of a child with a kidney condition, we know you need high quality, reliable and supportive information.

infoKID is an online information resource about kidney conditions in infants, children and young people.

Our information covers a range of conditions, symptoms, causes, diagnosis, treatment and management. You can access information as and when you need it, on screen or by downloading our leaflets as PDFs.

How was infoKID developed?

Launched in 2014, infoKID was a partnership project of three organisations: the Royal College of Paediatrics and Child Health, the British Association for Paediatric Nephrology and Kidney Care UK (formerly the British Kidney Patients Association).

The RCPCH has over 20,000 members in the UK and internationally and plays a major role in postgraduate medical education, professional standards, research and policy. Its mission is to improve the health and wellbeing of children and young people across the world, by supporting paediatricians, shaping policy and improving practice..

The BAPN sets out to improve the standard of medical care of children with kidney disease in the UK. It formulates opinions on policy, and runs clinical and scientific meetings to advance the knowledge and skills of children's kidney doctors.

Kidney Care UK is the UK's leading kidney patient support charity. It exists to improve the lives of kidney patients by giving support, information and financial aid to families affected by kidney disease.

infoKID is now managed by Kidney Care UK and the BAPN.

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How are families involved?

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
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How is the information produced?

All information topics are written in collaboration with healthcare professionals who support children with kidney conditions – including paediatric nephrologists, nurses, social workers, play specialists, surgeons and paediatric urologists.

The information goes through several stages of review to make sure it is accurate and relevant for families across the UK. All topics are reviewed by a professional medical editor.

Thank you to the many children’s healthcare professionals and organisations who helped to develop the infoKID information.

This project would not have been possible without the support of:

  • The children’s kidney centres across the United Kingdom
  • The British Association of Paediatric Urologists
  • The British Association of Perinatal Medicine
  • The National Kidney Federation
  • The UKKA
  • The National Registry of Rare Kidney Disease (RaDaR)
  • NHS Blood and Transplant – paediatric subgroup of the Kidney Advisory Group

Download a diagram of how we produce each information topic

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Information you can trust

infoKID carries The Information Standard kitemark to demonstrate that we provide reliable healthcare information for the public.

The Information Standard was a certification scheme set up by the Department of Health, to help identify trusted sources of health and social care information. While the Information Standard assessment and certification scheme has now closed, all our resources were produced according to its guidelines.

To gain the Standard, we had to demonstrate that our information is:

Balanced and evidence-based

All information was reviewed over several stages by healthcare professionals working in children’s kidney health; where required, we identified scientific evidence.

User tested

All information was sent to a panel of parents and carers.

Regularly reviewed

We made a commitment to review all information every three years – or more often as needed – to make sure it is up-to-date and accurate.

The British Association for Paediatric Nephrology shall hold responsibility for the accuracy of the information they publish and neither the Scheme Operator nor the Scheme Owner shall have any responsibility whatsoever for cost, losses or direct or indirect damages or cost arising from inaccuracy of information or omissions in information published on the website on behalf of the British Association for Paediatric Nephrology.

Please contact us if you are interested in translating any infoKID materials into another language. We will ask you to include this disclaimer (this is a translation of InfoKid):
Information for parents and carers, from www.infokid.org.uk, regarding [condition] [version information]. The English information has been prepared by the British Association for Paediatric Neurology (BAPN) and Kidney Care UK. The [company/person] is responsible for the translation and adaptation to [country e.g. Hungarian] conditions.

This information provides guidance and supportive information only, and it is important that you contact your doctor if you are uncertain about the healthcare or treatment your child is receiving.

This Website Is Produced By

infoKID is an online information resource for parents and carers about kidney conditions in infants, children and young people. Our information covers a range of conditions, symptoms, causes, diagnosis, treatment and management.