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 LoweMichelle.lowe@uhb.nhs.uk

Cystinosis Patient Day 2017

ADPKD Info Day, 1st July, London

 

Place: Monckton Lecture Theatre, St George’s Hospital, Cranmer Terrace, Tooting, London SW17 0RE
Time: Saturday 1st July 2017, 9:30 am to 4 pm
Hosted by: Dr Joyce Popoola, Dr Anand Saggar and the PKD Charity

  • 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.

Book online at Eventbrite.

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.

ARPKD Family Info Day 2017 Flyer

Cystinuria Patient Information Day, 22nd April

 

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

Rare Disease Day

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:

www.rarediseaseday.org