We would like your feedback on the first UK guideline on renal disease in pregnancy, which has been commissioned by the UK Renal Association. The aim of the guideline is to improve and standardise the care of women with CKD who are planning a pregnancy, pregnant, or in the postpartum period. The guideline has 97 statements that address the care of women with […]
Read more Posted on: 06.11.18 | Posted in Guidelines, PregnancyUK and Ireland’s First Patient Information Day on Fibromuscular Dysplasia (FMD) will take place on Saturday 19th January 2019 at Salford Royal Hospital Agenda The event is free to attend. To register please contact fmd.ukireland@gmail.com or @FmdsUk.
Read more Posted on: 01.10.18 | Posted in Fibromuscular Dysplasia, News, Patient Information Days, RaDaR, RDGs, ResearchA summary and photos of the recent ADTKD/UMOD Patient Information Day can be found below. ADTKD/UMOD patient information day summary
Read more Posted on: 28.09.18 | Posted in ADTKD, News, Patient Information Days, RaDaR, RDGs, ResearchA National Cystinuria Patient Day will be taking place on Saturday March 30th 2019 at Guy’s Hospital, London The event is free to attend for patients and relatives but registration is essential via the CystinuriaUK website. A draft programme is now available detailing the planned talks and discussion sessions. For more information please visit www.cystinuriauk.co.uk/patient-day […]
Read more Posted on: 26.09.18 | Posted in Cystinuria, News, Patient Information Days, RaDaR, RDGs, ResearchThe draft of a new Renal Association Clinical Practice Guideline on Monitoring children and young people with, or at risk of developing Autosomal Dominant Polycystic Kidney Disease (ADPKD) is now available for review. Please send any comments – listing page/guideline number as appropriate – to Melanie.Dillon@renalregistry.nhs.uk by Wednesday 10th October.
Read more Posted on: 12.09.18 | Posted in ADPKD, Guidelines, News, RaDaR, RDGs, ResearchThe latest issue of the RaDaR Newsletter contains information about our compliance with the new General Data Protection Regulations (GDPR) and forthcoming events for HNF1B and ADPKD patients.
Read more Posted on: 16.08.18 | Posted in ADPKD, HNF1b, MGRS, News, Newsletter, Patient Information Days, RaDaR, RDGs, ResearchPlace: Frank Lee Centre Hexagon, Addenbrooke’s Hospital, Cambridge, CB2 0SN Time: Saturday 15th September 2018, 9.30am to 4pm Hosted by: Professor Fiona Karet and the PKD Charity Talks and workshops on: The Basics of ADPKD Genetics and Screening Diet and Lifestyle Research Transplants New therapies Pain Registration Information: Online registration https://adpkdseptember2018.eventbrite.co.uk or contact Esther […]
Read more Posted on: 16.08.18 | Posted in ADPKD, Conference, News, Patient Information Days, RaDaR, ResearchRaDaR is now open to a new Cohort of patients – Monoclonal Gammopathy of Renal Significance (MGRS) – which covers the following conditions: AH amyloidosis AHL amyloidosis AL amyloidosis C3 glomerulonephritis with monoclonal gammopathy Crystalglobulinaemia Crystal-storing histiocytosis Fibrillary Glomerulonephritis Immunotactoid/Glomerulonephritis with Organised Microtubular Monoclonal Immunoglobulin Deposits (GOMMID) Intracapillary monoclonal IgM without cryoglobulin Intraglomerular/capillary lymphoma/leukaemia Light […]
Read more Posted on: 03.07.18 | Posted in MGRS, News, Patient Information, RaDaR, RDGs, ResearchWe are pleased to announce that Dr Danny Gale, Senior Clinical Research Fellow, UCL Centre for Nephrology, will take over from Dr Detlef Bockenhauer as the Chair for the Renal Association’s Rare Disease Committee and the lead for RaDaR. The official handover will take place at UK Kidney Week (19th- 21st June). Dr Kate Bramham, […]
Read more Posted on: 15.06.18 | Posted in News, RaDaR, RDGs, Research, UKKW
