The latest issue of the RaDaR Newsletter contains information about the recent NIHR Portfolio extension and details of up-coming events.
Category: Patient Information Days
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
ADPKD Info Day, 1st July, London
- Learn about ADPKD (Autosomal Dominant PKD) and the latest research
- Find out more about the new drug, Jinarc (tolvaptan)
- Put your questions to the experts
- Meet and share your experiences with others
- Everyone welcome – patients, families and carers
Lunch and refreshments included. There is no charge, but a donation is welcome to help cover the costs.
ARPKD Family Day, 22nd July, Birmingham
The PKD Charity are organising an ARPKD Family Day on Saturday, 22nd July 2017 at Uffculme Centre, Queensbridge Road, Moseley, Birmingham B13 8QY from 10 am – 3pm.
The event will include:
- Keynote talks about ARPKD from the experts
- Roundtable discussions between parents, patients, doctors & scientists
- Supervised entertainment & activities for children and young people at the Marvellous Superstar Summer Party organised by Birmingham Children’s Hospital
Travel bursaries are available.
