New aHUS website

  The National Renal Complement Therapeutics Centre in Newcastle has launched a new website – – containing information for both patients and clinicians on atypical haemolytic uraemic syndrome and C3 glomerulopathy. The site contains information about the diagnosis and management of aHUS, including patients who have end-stage renal failure and may benefit from the prophylactic use of eculizumab […]

Read more Added on: 27.07.17

Current Recruitment

RaDaR is open for recruitment for children and adults with the following conditions: Adenine Phosphoribosyltransferase Deficiency (APRT-D) AH amyloidosis AHL amyloidosis AL amyloidosis Alport Syndrome Atypical Haemolytic Uraemic Syndrome (aHUS) Autosomal Dominant Polycystic Kidney Disease (ADPKD) Autosomal Recessive Polycystic Kidney Disease (ARPKD) Bartters Syndrome BK Nephropathy C3 glomerulonephritis with monoclonal gammopathy C3 Glomerulopathy Calciphylaxis Crystalglobulinaemia […]

Read more Added on: 27.06.18

Cystinosis Rare Disease Lead Advert

  After over five highly successful years in the role, Dr Graham Lipkin is stepping down as lead for the Cystinosis Rare Disease Group and a replacement is now being sought. This is a real opportunity to lead an enthusiastic group of clinicians, in partnership with patients and Industry, to support improvement in patient service, […]

Read more Added on: 03.10.17

RaDaR Newsletter, Summer 2017

  The Summer issue of the RaDaR Newsletter features updates from the IgA Nephropathy and aHUS groups, details of a Cystinosis patient information event in Birmingham and important information about the forthcoming Ethics amendment.

Read more Added on: 09.08.17

RaDaR Presentations

RaDaR has been presented at a variety of conferences, both in the UK and internationally. The posters and presentational material from some of these events are gathered below. You are welcome to use this material to promote RaDaR but please contact us for updated recruitment statistics or editable PowerPoint templates. ECRD 2018 ARPKD Poster – Maria Kokocinska, Nephrology & Rare […]

Read more Added on: 11.10.16

Site Map

Home      Information Standard  Protocol           Writing for RareRenal Guidelines      Patient Information          Alport Syndrome          APRT Deficiency          Bartter Syndrome (Types 1, 2 & 4)          Bartter Syndrome (Type 3) & Gitelman Syndrome           Cystinosis               Cystinosis Medical Alert               White Cell Cystine Sampling Guidance           Cystinuria           Dense Deposit Disease           Dent […]

Read more Added on: 01.08.13

Cystinosis Medical Alert

For a downloadable and printable version of this information click here. Children with Cystinosis are particularly prone to the effects of dehydration and their carers and physicians need to be fully aware of the risks for them. This alert page is to guide families and their doctors in order that these children receive proper assessment and […]

Read more Added on: 06.06.13