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.
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
The 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.
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.
A summary and photos of the recent ADTKD/UMOD Patient Information Day can be found below.
A National Cystinuria Patient Day will be taking place on Saturday March 30th 2019 at Guy’s Hospital, London
The event is free to attend for patients and relatives but registration is essential via the CystinuriaUK website.
A draft programme is now available detailing the planned talks and discussion sessions.
For more information please visit www.cystinuriauk.co.uk/patient-day