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.email@example.com
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
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.
Cystinuria Patient Day flyer
Cystinuria Patient Day Programme
The latest edition of the RaDaR Newsletter contains important information about re-consenting paediatric patients when they reach the age of 16, as well as details of an upcoming ADPKD patient information day.
The PKD Charity is organising an information and support day for patients and families with Autosomal Dominant Polycystic Kidney Disease (ADPKD). The event will be held at Engineers’ House, Bristol BS8 3NB on Saturday 11 March 2017 from 9.30 – 4pm.
Attendance is free with lunch and refreshments provided but please register online to book your place.
Tuesday 28th February 2017 marks the tenth international Rare Disease Day. Hundreds of patient organisations from all over the world will be holding events designed to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The theme for 2017 is research. Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care.
RaDaR and RareRenal.org are proud to support Rare Disease Day and the campaign to boost research into rare diseases.
Further details of the day and a list of worldwide events can be found at:
Thursday 9th March 2017 marks World Kidney Day (WKD) – an annual global awareness and education event.
This year the theme is Kidney Disease and Obesity.
Every year, countless local, national and international events are organised by kidney charities, healthcare professionals, patient groups and individuals.
We encourage everyone to get behind the campaign and try to organise an activity or event to draw public attention to the importance of kidney health – what can be done to protect kidneys before disease strikes, and to assist patients who already have chronic kidney disease.
Further details can be found at the World Kidney Day UK website: