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.
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.
Help us bring together millions of people across the world and unite with one powerful voice for kidney health awareness.
World Kidney Day in the UK is led by the Kidney Charities Together group (Kidney Care UK, Kidney Research UK, NKF (Kidney Patients UK) and the PKD Charity). Help us bring together millions of people across the world and unite with one powerful voice for kidney health awareness.
Over 180 support packs have already been sent out to renal and transplant units as well as individuals and patient groups supporting the day by organising an awareness activity or event.
What are you planning, following the 2019 global theme of Kidney Health for Everyone Everywhere?
Ideas for activities and downloadable resources are available from www.worldkidneyday.co.uk and you can apply for a support pack www.worldkidneyday.co.uk/order-support-pack/ but don’t delay – stocks are running low
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.
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 attend and CPD event approval has been applied for.
To reserve a place please email email@example.com by Thursday 18th April.
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
- Diet and Lifestyle
Lunch and refreshments included
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.
The Fibromuscular Dysplasia (FMD) Rare Disease Group have produced a update on their recent patient information day in Salford and a review of current literature.
The latest issue of the RaDaR Newsletter contains a summary of the year’s achievements and information about patient events in 2019.