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.
Category: Patient Information Days
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).
UMOD Patient Information Day – Postponed
Due the severe adverse weather conditions and disruptions to transport, this meeting has unfortunately been postponed. Further updates will follow once a new date has been determined.
Delivering Success: An update on pregnancy and CKD
RaDaR Newsletter, Summer 2017
The Summer issue of the RaDaR Newsletter features updates from the IgA Nephropathy and aHUS groups, details of a Cystinosis patient information event in Birmingham and important information about the forthcoming Ethics amendment.
CANCELLED – Cystinosis Study Day, Tuesday 19th September
Due to unforeseen circumstances the National Cystinosis Study Day has had to be postponed. The event will hopefully be re-scheduled for Spring 2018. Details will be published here once they are confirmed.
A National Cystinosis Study Day will be held on Tuesday 19th September 2017 from 9.30am – 4.30pm at the Post Graduate Centre, Queen Elizabeth Hospital, Birmingham.
Patients and Health Professionals with an interest in Cystinosis are welcome.
To register for a place, please contact Michelle Lowe – Michelle.lowe@uhb.nhs.uk
