News

RSM meeting – 8th May

The Royal Society of Medicine (RSM) are hosting an event on Rare diseases and the kidney on the 8th May 2019 at Salford University, Media City Campus. This high quality meeting will bring experts from a wide variety of rare disease areas together to present the latest updates and developments in rare diseases. The meeting […]

Read more Posted on: 22.03.19 | Posted in Clinician Event, Conference, News, RaDaR, RDGs, Research

GDPR Update

To ensure that RaDaR is compliant with the new General Data Protection Regulations, which came into force on May 25th 2018, two Privacy Statements have been produced  to cover both Rare  Renal and RaDaR.  The documents detail what data is collected from patients and how it stored, linked and accessed. Rare Renal Privacy Notice RaDaR […]

Read more Posted on: 14.03.19 | Posted in GDPR, News, RaDaR, Research

RaDaR Newsletter Spring 2019

In celebration of World Kidney Day the latest edition of the RaDaR rare disease registry newsletter contains important information about our NIHR Portfolio extension and details of forthcoming patient and clinician information events. RaDaR Newsletter Spring 2019

Read more Posted on: 14.03.19 | Posted in ADPKD, Clinician Event, Conference, Cystinuria, Fibromuscular Dysplasia, GDPR, News, Newsletter, NIHR, Patient Information Days, RaDaR, RDGs, Research, Vasculitis, World Kidney Day

Vasculitis Education Day

We are pleased to announce the inaugural UK and Ireland Rare Disease Group Vasculitis Education Day will be held on Thursday May 16th 2019 at Salford Royal Foundation Trust. Programme The day is predominantly aimed at renal and rheumatology trainees and junior consultants but is open to any interested health care professional. This event is free of charge to […]

Read more Posted on: 01.03.19 | Posted in Clinician Event, Conference, News, RaDaR, RDGs, Research, Vasculitis

ADPKD Patient Information Day – Saturday 30th March, Aintree

The PKD Charity will be hosting the next ADPKD Patient Information Day on Saturday, 30 March 2019 from 10:00am – 16:00pm at  Aintree University Hospital Lower Lane, Liverpool. L9 7AL The event is free to attend and will include talks on: The Basics of ADPKD Genetics Diet and Lifestyle Research Transplants Lunch and refreshments included […]

Read more Posted on: 28.02.19 | Posted in ADPKD, Clinician Event, Conference, News, Patient Information Days, RaDaR, RDGs, Research

Extension of RaDaR’s Portfolio support

Thanks to the generous support of Kidney Research UK, RaDaR will maintain it’s presence on the NIHR’s Research Portfolio until 31/03/2020. This ensures that recruiting sites will continue to receive financial support for every patient that they recruit to the rare disease registry.

Read more Posted on: 18.02.19 | Posted in News, NIHR, RaDaR, RDGs, Research