Primary Hyperoxaluria Webinar, 15th August

    The Oxalosis & Hyperoxaluria Foundation (OHF) and Dicerna Pharmaceuticals invite you to participate in a webinar on Tuesday, August 15, 2017 at 16.00 hours GMT to discuss research presented by Dicerna during the 12th International Workshop on Primary Hyperoxaluria in Tenerife, Spain in July. At the meeting, Dicerna announced the expansion of its […]

Read more Posted on: 11.08.17 | Posted in Clinician Event, International, News, Primary Hyperoxaluria, Research, Webinar

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 Posted on: 27.07.17 | Posted in aHUS, Research

IgAN Journal of Kidney Care Article

  The IgA Nephropathy Rare Disease Group have had an article published in this month’s issue of the Journal of Kidney Care.  The article discusses how having access to an international rare disease registry with data on this disease can help improve kidney care around the world. IgA Nephropathy: driving innovation with a rare renal disease registry.

Read more Posted on: 26.07.17 | Posted in IgAN, International, RaDaR, Research

CANCELLED – Cystinosis Study Day, Tuesday 19th September

Due to unforeseen circumstances the National Cystinosis Study Day has had to be postponed. The event will hopefully be re-scheduled for Spring 2018. Details will be published here once they are confirmed.   A National Cystinosis Study Day will be held on Tuesday 19th September 2017 from 9.30am – 4.30pm at the Post Graduate Centre, Queen Elizabeth […]

Read more Posted on: 06.07.17 | Posted in Clinician Event, Cystinosis, Patient Information Days

Proposed Ethics Amendment for RaDaR

  The RaDaR Operational Management Board and Rare Disease Group Leads have agreed to apply for an Ethics amendment to clarify the fact that RaDaR consent covers Patient View sign-up, subject to availability at individual renal units. The proposed amendment will also allow for data linkage to other registries, including the Hospital Episode Statistics (HES) […]

Read more Posted on: 20.06.17 | Posted in Ethics, Patient View, RaDaR, Research

RaDaR Case Study

  RaDaR features as a Case Study on the new Understanding Patient Information website, with the focus on supporting research into rare kidney disease.

Read more Posted on: 15.06.17 | Posted in Case Study, RaDaR, Research

ADPKD Info Day, 1st July, London

  Place: Monckton Lecture Theatre, St George’s Hospital, Cranmer Terrace, Tooting, London SW17 0RE Time: Saturday 1st July 2017, 9:30 am to 4 pm Hosted by: Dr Joyce Popoola, Dr Anand Saggar and the PKD Charity Learn about ADPKD (Autosomal Dominant PKD) and the latest research Find out more about the new drug, Jinarc (tolvaptan) […]

Read more Posted on: 05.06.17 | Posted in ADPKD, Patient Information Days

NephroS Newsletter, June 2017

  The latest issue of the NephroS Newsletter has details on the current accrual and a report from the recent Patient Information day in Bristol back in March. NephroS Newsletter June 2017

Read more Posted on: 01.06.17 | Posted in NephroS, Newsletter

ARPKD Family Day, 22nd July, Birmingham

  The PKD Charity are organising an ARPKD Family Day on Saturday, 22nd July 2017 at Uffculme Centre, Queensbridge Road, Moseley, Birmingham B13 8QY from 10 am – 3pm. The event will include: Keynote talks about ARPKD from the experts Roundtable discussions between parents, patients, doctors & scientists Supervised entertainment & activities for children and young people […]

Read more Posted on: 29.05.17 | Posted in ARPKD, Patient Information Days