UK Registry for Rare Kidney Diseases, eponym RaDaR
RaDaR is an initiative of the Renal Association and the British Association for Paediatric Nephrology. It operates within the UK Renal Registry, and its governance lies with the Renal Association. The initiative is supported by the Medical Research Council and Kidney Research UK.
The purpose of the registry is to assemble cohorts of patients whose kidney disease is thoroughly investigated and characterised. Patients in the registry can then be approached to participate in "translational" research. Translational research aims to connect the basic scientific investigation of a disease to tangible benefit for the patient. Benefits might include better diagnosis, patient information, treatment trials, and ultimately better care.
Kids Kidney Research
Kids Kidney Research (previously know as the Kidney Research Aid Fund, KRAF) was set up by a group of people who had friends and family with kidney disorders. Although they were all adults with kidney disease, they decided to support paediatric kidney research since many would not have been in the position they were in had their conditions been treated in childhood.
Bristol University - School of Clinical Sciences - Academic Renal Unit
The Academic Renal Unit was established in 1995 and takes pride in providing an exciting and stimulating environment for research. We aim to achieve excellence in research whilst continuously striving to develop novel therapeutic approaches to benefit patients with kidney failure and diabetes by conducting laboratory and clinical research.
British Kidney Patient Association
The British Kidney Patient Association is a well established charity working to improve the quality of life for adults and children with kidney disease.
The charity was founded in 1975 by Elizabeth Ward, after her 13 year old son was diagnosed with kidney failure. Since her retirement, the valuable work of the BKPA remains in the hands of a small and highly dedicated team of individuals with many years of experience.
UK National Kidney Federation
The National Kidney Federation is unique because, although there are a large number of kidney charities, the NKF is the national kidney charity actually run by Kidney Patients for Kidney Patients.
British Association for Paediatric Nephrology
The aims of the association are, to set and to improve the standard of medical care of children with renal disease, formulate and express opinions on policy concerning the care of children with renal disease, conduct clinical and scientific meetings in order to advance the knowledge and skills of doctors with responsibility for children with renal disease, conduct collaborative research and audit and to disseminate results, consider the training, continuing education and professional development of paediatricians with responsibility for children with renal disease.
BBC Health - Childhood Nephrotic Syndrome
The BBC Health information on Nephortic Syndrome in children.
Edinburgh Royal Infirmary Renal Unit - Info on Nephrotic Syndrome
The Edinburgh Royal Infirmary Renal Units information on Nephortic Syndrome.
The Nephcure Foundation (USA)
The Nephcure Foundation is the only non-profit organisation committed exclusively to support research seeking a cause for two potentially devastating kidney diseases, Nephrotic Syndrome and Focal Segmental Glomeruloscierosis (FSGS), improve treatment and find a cure.
Nephrotic Syndrome - Wikipedia
Wikipedia information on Nephortic Syndrome.