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).
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
- 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.
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.
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
A Cystinuria Patient Information Day will be held at Guy’s Hospital, London on Saturday 22nd April 2017
The day is designed for patients, families and carers to learn more about Cystinuria and to meet other people with the condition
Attendance is free with lunch and refreshments provided but please register online at www.cystinuriauk.co.uk to book your place.