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, ResearchTo 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, ResearchIn 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 DayHelp 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 […]
Read more Posted on: 05.03.19 | Posted in Clinician Event, International, News, Patient Information, RaDaR, RDGs, Research, World Kidney DayWe 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, VasculitisThe 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, ResearchThanks 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, ResearchThe Retroperitoneal Fibrosis Rare Disease Group are hosting a Public and Patient Involvement event on Saturday 2nd March in London in order to work together with patients and their carers to learn more about this rare condition and improve treatment. RPF PPI Event
Read more Posted on: 05.02.19 | Posted in News, Patient Information Days, RaDaR, RDGs, RPFThe first international consensus guide on the diagnosis and management of Fibromuscular Dysplasia has recently been published. This can be accessed at: Journal of Hypertension Vascular Medicine
Read more Posted on: 04.02.19 | Posted in Fibromuscular Dysplasia, Guidelines, International, News, ResearchThe Fibromuscular Dysplasia (FMD) Rare Disease Group have produced a update on their recent patient information day in Salford and a review of current literature. FMD group update
Read more Posted on: 02.02.19 | Posted in Fibromuscular Dysplasia, News, Patient Information Days, RaDaR, RDGs, Research
