Cystinosis Study Day

On Tuesday 1st October 2013 a Cystinosis Study Day was held at the Queen Elizabeth Hospital in Birmingham. The event was attended by healthcare professionals involved in the care of children and adults with Cystinosis.

For a copy of the progamme and further details of the event please click here.

The presentations are now available to download in PDF format.

Introduction & Welcome – Dr Graham Lipkin (Consultant Nephrologist, Queen Elizabeth Hospital Birmingham)

Overview of Cystinosis – Dr Stephen Waldek (Independent Medical Consultant, Manchester)

Renal disease in the paediatric setting – Dr Sally Hulton (Consultant Paediatric Nephrologist, Birmingham Children’s Hospital)

Renal disease in the adult setting – Dr Graham Lipkin Consultant Nephrologist, Queen Elizabeth Hospital Birmingham)

Cystinosis and the eye – Dr Elizabeth Graham (Consultant Ophthalmologist, St Thomas’ Hospital, London)

Patient transition and the Birmingham model – Mr Steven Wise (CNS Renal Metabolic Disease, Queen Elizabeth Hospital, Birmingham)

Problems with nutrition and swallowing – Dr Mark Bradbury (Consultant Paediatric Nephrologist, Royal Manchester Children’s Hospital)

Neurological and neuromuscular complications and their management – Dr Nick Davies (Consultant Neurologist, Queen Elizabeth Hospital, Birmingham)

What’s new in Cystinosis research – Prof Roz Anderson (Professor of Pharmaceutical Chemistry, University of Sunderland)

Endocrine and bone problems and their management – Dr Jeremy Kirk (Consultant in Paediatric Endocrinology, Birmingham Children’s Hospital)

Patients’ perceptions of illness and treatment applications to Cystinosis – Professor John Weinman (Professor of Psychology, Kings College, London)

Patients’ perspective and the role of the Cystinosis Foundation – Ami Froehlich (Secretary, Cystinosis Foundation UK)

Cystinosis Study Day Version 1 Updated November 2013
Written by the Cystinosis Rare Disease Group