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

Clinician Educational Meeting on RaDaR & Fabry Disease

  Prof Detlef Bockenhauer, chair of the Rare Disease Committee of the Renal Association, is hosting a forum to help clinicians and researchers to better understand RaDaR and Fabry Disease in particular. The event will be held during UK Kidney Week on Monday 19th June 2017 at the Pullman Hotel, Kings Dock, Liverpool, L3 4FP The meeting […]

Read more Posted on: 24.05.17 | Posted in Clinician Event, Fabry, RaDaR, Research

RaDaR Update following NHS Cyber Attack

  In regards to the recent cyber attack on the NHS, we want to reassure you that RaDaR has not been affected and that the patients’ data remains secure. Neither the RaDaR servers nor North Bristol Trust (where our admin team are based) have been affected by this attack. Although data transfer to Patient View […]

Read more Posted on: 15.05.17 | Posted in News, RaDaR

International IgA Nephropathy Grant

  The IgAN research group in Leicester has been given £2.7 million to establish the world’s first international registry of IgA Nephropathy patients. The registry will follow the same format as RaDaR and will collect clinically characterised data from IgA Nephropathy patients across Europe, Asia and South America. University Of Leicester’s Press Release

Read more Posted on: 09.05.17 | Posted in IgAN, International, RaDaR, Research

ADPKD Research Study

Cambridge Clinical Trials Unit are looking to recruit patients with Autosomal Dominant Polycystic Kidney Disease (ADPKD) to take part in a research study looking at water intake. The DRINK Study will randomly assign participants to either a daily prescription of high water intake or to continue with their usual drinking practices. The aim is to […]

Read more Posted on: 05.05.17 | Posted in ADPKD, Research

Cystinuria Patient Information Day, 22nd April

  A Cystinuria Patient Information Day will be held at Guy’s Hospital, London on Saturday 22nd April 2017 The day is designed for patients, families and carers to learn more about Cystinuria and to meet other people with the condition Attendance is free with lunch and refreshments provided but please register online at to […]

Read more Posted on: 29.03.17 | Posted in Cystinuria, Patient Information Days

Rare Disease Clinician Event, Germany

  RD-Connect, NeurOmics and EURenOmics are hosting a rare disease outreach day on 3rd May in Berlin, Germany. The event aims to brimg together stakeholders from the rare disease community to share the value of the tools created and the knowledge generated through these projects.  Invitation to Outreach Day  

Read more Posted on: 29.03.17 | Posted in Clinician Event, Research

New Website Design

Welcome to the newly re-designed Following a lengthy consultation process we have re-designed the site to allow for a cleaner navigation and more intuitive user journey. This includes a new logo, more prominent social media links and the option for patients as well as clinicians to sign up for our Newsletter advertising information events and […]

Read more Posted on: 26.02.17 | Posted in News