UK and Ireland’s First Patient Information Day on Fibromuscular Dysplasia (FMD) will take place on Saturday 19th January 2019 at Salford Royal Hospital
The event is free to attend. To register please contact fmd.ukireland@gmail.com or @FmdsUk.
Category: Patient Information Days
ADTKD Patient Information Day Summary
A summary and photos of the recent ADTKD/UMOD Patient Information Day can be found below.
ADTKD/UMOD patient information day summary
Cystinuria Patient Day – Saturday March 30th 2019 – London
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
Tuberous Sclerosis patient day – Saturday 22nd September – Newcastle
RaDaR Newsletter – Summer 2018
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.
ADPKD Information & Support Day – 15th September 2018 – Cambridge
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
- Research
- Transplants
- New therapies
- Pain
Registration Information: Online registration https://adpkdseptember2018.eventbrite.co.uk or contact Esther Wright at info@pkdcharity.org.uk
There is no charge to attend but a donation is always welcome. Refreshments and lunch included.
RaDaR newsletter, Spring 2018
The latest issue of the RaDaR Newsletter contains information about the recent NIHR Portfolio extension and details of up-coming events.
HNF1b Support Day – September 2018
RaDaR: The Next Ten Years
On Wednesday 28th February 2018 a joint patient and clinician event was held at the Queen Elizabeth Hospital, Birmingham to celebrate RaDaR’s achievements to date and consider where we go in the next ten years.
The Agenda, a report from the day and pdfs of the presentation can be found below.
Presentations
RaDaR Introduction – Melanie Dillon
RaDaR Future – Detlef Bockenhauer
Examples of research using RaDaR – Liz Colby
Membranous Nephropathy Presentation Paul Brenchley
RaDaR Newsletter, Winter 2018
The latest copy of the RaDaR Newsletter contains important information about re-consenting paediatric patients as well as details of forthcoming events for Rare Disease Day (28th February) and World Kidney Day (8th March).
