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.
RaDaR Meeting Agenda
RaDaR Meeting Report
RaDaR Introduction – Melanie Dillon
RaDaR Future – Detlef Bockenhauer>
Examples of research using RaDaR – Liz Colby
Membranous Nephropathy Presentation Paul Brenchley
Kidney Research UK – Sarah-Louise Harwood & Tracey Murray
Kidney Care UK – Fiona Loud
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).
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.
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.
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.firstname.lastname@example.org
Cystinosis Patient Day 2017
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.
ARPKD Family Info Day 2017 Flyer
The Spring Issue of the RaDaR Newsletter features the latest recruitment updates, details of an ADPKD research study and an advert for a forthcoming rare disease patient day in Birmingham.
A Cystinosis Patient and Clinician Education Day will be held on Tuesday 19th September from 9.30 – 16.30 at the Postgraduate Centre, Queen Elizabeth Hospital, Birmingham.
Further details will be available nearer the time but to express an interest in taking part as a speaker please contact Michelle.Lowe@uhb.nhs.uk