The Renal Association is the organisation of professional UK nephrologists. These links are provided for patients who find this site, and for nephrologists to explore and pass on to patients. They are, inevitably, only a small selection of what is available.
General patient information about kidney diseases
Renal PatientView – if you are a patient of a UK kidney unit you may be able to get access to your blood test results and information about your diagnosis and treatment via a login to this. Demo logins are available from the foot of the home page.
National Kidney Federation (UK) – the federation of UK kidney patient groups has a particularly good collection of patient information under the Medical heading. They also produce these as leaflets and have a helpline, 0800 169 0936 . See also their list of companies that may do travel insurance for renal patients. email firstname.lastname@example.org.
Kidney Care UK is a UK registered charity, working to improve the quality of life for adults and children with chronic kidney disease.
NIDDK – National Institute for Diseases of the Digestive system and Kidney (USA) – has some patient information. Accurate and good but heavy in parts and few pictures.
National Kidney Foundation (USA) – now has improved info for patients on its website.
Information about dialysis and transplantation
Many more sites seem to provide this – partly because of support from dialysis companies. These are a few of the best.
KidneyPatientGuide, from Wrexham Maelor Hospital and sponsored by a grant from the Wellcome trust. – Educational and entertaining animations of dialysis, vascular access, fluid balance, and a bulletin board enliven this well-produced site.
Nephron.com has all sorts of info but the most useful for patients are on this page: scroll down to Tips for healthy care, and Kidney resources for patients.
KidneyDirections – From Baxter Healthcare but non-partisan. Amongst the best sites providing information on dialysis, with good comparisons of peritoneal versus haemodialysis. Even covers ‘no dialysis’ briefly. Illustrated with patients’ and carers’ stories. Rather complicated to negotiate though – those new to the Net would probably find it confusing.
Kidneywise must be the British equivalent of Kidney Directions – again sponsored by Baxter, particularly good on ‘what will happen to you’ as kidney function worsens. Quite brief but very clear info in each section. Also a discussion board and lists of UK units etc
Chat, support, and experiences
Internet discussion boards and email discussion groups are sometimes very helpful. At other times people may say things that are just wrong, so take care. For UK readers note particularly the talkline on the NKF website and the bulletin board at the KidneyPatientGuide site. There are a number of others, including some email groups.
Quackwatch by Dr Stephen Barrett provides information on heavily advertised treatments for which the claims are often much more impressive than the track record.