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
The latest issue of the RaDaR Newsletter contains information about our compliance with the new General Data Protection Regulations (GDPR) and forthcoming events for HNF1B and ADPKD patients.
Place: Frank Lee Centre Hexagon, Addenbrooke’s Hospital, Cambridge, CB2 0SN
Time: Saturday 15th September 2018, 9.30am to 4pm
Hosted by: Professor Fiona Karet and the PKD Charity
Talks and workshops on:
- The Basics of ADPKD
- Genetics and Screening
- Diet and Lifestyle
- New therapies
There is no charge to attend but a donation is always welcome. Refreshments and lunch included.