A selection of links that might be of use and interest to you…
Transplant Kids - information for children and their parents who have either had or are going to have a transplant – a site created and maintained by a transplant family. Contains stories about transplants, forums and information about transplants for both children and adults.
UK National Kidney Federation - National patient group, run by kidney patients, for kidney patients, their aim is to promote the best renal medical practice and treatment. Provides on-line forums and medical information on specific conditions. There is a series of useful booklets aimed at children and their families, which explain about kidney disease, dialysis, kidney transplants as well as a range of kidney tests and treatments. The YPG Zone is a contact point for young patients, where they can get support and share experiences with other young patients.
The British Kidney Patient Association was founded in 1975 by Elizabeth Ward, whose son Timbo was diagnosed with kidney failure at the age of 13 years. The work of the BKPA falls roughly into two halves engendered by two quite separate needs; on the one hand the material and physical needs of the patients and their relatives and on the other the necessity to lobby for more and improved facilities and increased Governmental funding so that all patients may benefit from improvements in technology and pharmaceutical achievements. At the same time it is necessary to create through the media, awareness of the need for kidney donors and all problems resulting from the lack of them.
Polycystic Kidney Disease (PKD) Charity UK About 70,000 adults and children in the UK have Polycystic Kidney Disease or PKD – life-threatening inherited conditions that can cause renal (kidney) failure and affect other organs in the body. Over 12 million children and adults worldwide have PKD. They support those affected, their families and carers, with information, help and understanding. They raise awareness and fund research into the causes of PKD, with the hope of discovering treatments and a cure.
The Alder Hey Kidney Fund was founded in 1968 by parents and friends of children with renal and urological disorders.
The Nephrotic Syndrome Trust or NeST was set up in 2005 by David Yearsly, whose son James suffers from the disease. The Trust aims to:
Great Ormond Street Hospital – medical information for families about a variety of kidney conditions
World Kidney Day – A day devoted to raising awareness about the importance of our kidneys and to spread the message that Kidney disease is common, harmful and treatable.
Kidney Patient Guide - a website for kidney patients and those who care for them. There’s lots of information, including a selection of animations that explain the importance of monitoring your fluid intake and which explain dialysis and transplantation.
Medikidz - Here you’ll find everything you wanted to know about medicine and medical issues, explained in a way children can understand.
Association for Medical Research Charities - The AMRC is a membership organisation of the leading medical and health research charities in the UK, which aims, amongst other things, to support the sector and develop best practice and improving public dialogue. Kids Kidney Research was accepted for membership in May 2007 and is looking forward to a long and mutually beneficial relationship.
BAPN - British Association for Paediatric Nephrology – The BAPN was established to improve the health care of children with kidney disease through research and development, education and organized service delivery.
Kidney Research UK - Kidney disease is not, as commonly thought, a disease that affects only the elderly – it can happen at any age. Treatment options include a transplant – for which there is a waiting list or a life on dialysis, a life sustaining treatment – but which can severely restrict daily life.
Founded in 1961, Kidney Research UK is the country’s leading charity funding research in to the prevention, treatment and management of kidney disease. We have played a significant and vital role in medical science, having invested over £30 million pounds in kidney research since 1961. We are dedicated to supporting research, improving patient care and raising public awareness of kidney disease issues.
Tel: 0845 0707601
Registered Charity No. 252892. Scottish Charity No. SC039245
FUN AND GAMES
Try the World Kidney Day online quiz - Are your kidneys OK?