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World Kidney Day – 10th March 2016
On Thursday 10th March 2016, World Kidney Day will be celebrated worldwide, bringing together millions of people in over 150 countries and uniting them to produce a powerful voice for kidney health,...
View ArticleNephrotic Syndrome Patient Information Day
A Nephrotic Syndrome Patient Information Day will be held at Royal Manchester Children’s Hospital, Oxford Road, Manchester, M13 9WL on Wednesday 16th March 2016 from 1pm to 5pm. The event is open to...
View ArticleMembranous Nephropathy Patient Forum
The first meeting of the National Patient Forum for Membranous Nephropathy (MN) will be held on Saturday 19th March 2016 at the NOWGEN Centre, 29 Grafton Street, Manchester, M13 9WU. An invitation...
View ArticleRaDaR opens for ADPKD recruitment
The RaDaR Rare Disease Registry is now open to Autosomal Dominant Polycystic Kidney Disease (ADPKD) patients. No additional approvals are needed to recruit these patients. The inclusion criteria for...
View ArticleRaDaR Newsletter
The latest edition of the RaDaR Newsletter contains important information about the re-launch of the rare disease registry, as well as the latest recruitment figures and details of forthcoming patient...
View ArticleRaDaR on Social Media
We now have a social media presence for both RaDaR and RareRenal.org. Our Facebook page is https://www.facebook.com/RenalRadar/ and our Twitter feed is https://twitter.com/RenalRadar We will be using...
View ArticleRenaming of FUAN RDG
The FUAN Rare Disease Group which covers Hyperuricaemic Nephropathy and Medullary Cystic Kidney Disease has been renamed ADTKD for Autosomal Dominant Tubulointerstitial Kidney Disease. The Rare Renal...
View ArticleNephrotic Syndrome data entry guidelines
Guidelines for RaDaR data entry for Idiopathic Nephrotic Syndrome patients can be found here. These guidelines apply to all INS patients, regardless of whether they have also been recruited to the...
View ArticleRaDaR opens for Retroperitoneal Fibrosis recruitment
The RaDaR Rare Disease Registry is now open to Retroperitoneal Fibrosis (RPF) patients. No additional approvals are needed to recruit these patients. The inclusion criteria for RPF patients can be...
View ArticleHNF1B Patient Day presentations
Presentations from the recent HBF1B Patient Information Day are now available online.
View ArticleRaDaR recruits its 5,000th UK patient!
The National Registry of Rare Kidney Diseases (RaDaR) recruited its 5,000th UK patient in April 2016. RaDaR is an initiative by UK kidney specialists (the Renal Association). It is designed to pull...
View ArticleARPKD Family Conference 2016
An ARPKD Family Information Day will take place on Saturday, 16th July 2016 from 10:00am to 4pm at Kingston University, Kingston Hill, Kingston upon Thames Surrey KT2 7LB. Travel bursaries are...
View ArticleRecommendations for men taking mycophenolate derivatives and pregnancy
The Pregnancy and CKD Rare Disease Group have produced a set of recommendations for men taking mycophenolate derivatives and pregnancy following MHRA recommendations.
View ArticleRaDaR Newsletter
The latest edition of the RaDaR Newsletter contains important information about our plans for a Protocol amendment to allow for postal consent, as well as the latest recruitment figures and details of...
View ArticleRare Renal Disease Day at Cambridge
Addenbrookes Hospital Cambridge are hosting a rare renal disease day on Friday 1st July 2016. For booking details and an Agenda please click here.
View ArticleAPRT Deficiency Patient and Clinician Day
Patients, family members and clinicians are invited to attend an APRT Deficiency Information Day on Friday 29th July 2016 from 1 – 5pm at the Royal Free Hospital, London. Topics for discussion will...
View ArticleNephrotic Syndrome Trust (NeST) update
The latest news from the Nephrotic Syndrome Trust (NeST) can be found here.
View ArticleRaDaR opens to Postal Consent
Patients can now be consented to RaDaR by post, following a successful amendment submission the South West-Central Bristol Research Ethics Committee. The amendment has resulted in changes to the RaDaR...
View ArticleExtension in Pregnancy and CKD inclusion criteria
The RaDaR inclusion criteria for Pregnancy and Chronic Kidney Disease patients have been extended to include women with CKD stages 1 and 2, in addition to existing criteria of CKD stages 3-5, renal...
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