Primary Hyperoxaluria Patient Information Day

2017 Patient Information Day

The second Primary Hyperoxaluria Patient Information Day was held at Birmingham Children’s Hospital on Saturday 28th January 2017. An agenda and feedback report provide further information on the event, which was organised in partnership with the Oxalosis and Hyperoxaluria Foundation

Several of the presentations are now available to download in PDF format.

Understanding Primary Hyperoxaluria & the RaDaR rare disease registry Sally Hulton (Consultant Paediatric Nephrologist, Birmingham Children’s Hospital), Kim Hollander (Chief Executive, Oxalosis and Hyperoxaluria Foundation) & Melanie Dillon (RaDaR Operations Manager, UK Renal Registry

The Oxalosis and Hyperoxaluria Foundation Kim Hollander (Chief Executive, Oxalosis and Hyperoxaluria Foundation)

The Biology of Primary Hyperoxaluria Christopher Danpure (Emeritus Professor of Molecular Cell Biology, University College London)

Laboratory Diagnosis of Primary Hyperoxaluria Gill Rumsby (UCL Hospitals, London)

2013 Patient Information Day

On Saturday 27th April 2013 the first UK PH Patient Information Day was held at Birmingham Children’s Hospital.

Over 60 patients and families from across the UK and Europe attended talks by specialists in both paediatric and adult nephrology. Topics covered included the genetics of PH, drug treatments, dialysis and transplantation.

We were also delighted to present Kim Hollander, Chief Executive of the Oxalosis and Hyperoxaluria Foundation, who kindly provided funding for the Play Centre to entertain the children during the day.

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

Several of the presentations are now available to download in PDF format.

Understanding the Biological Aspects of PH – Christopher Danpure (Professor of Molecular Cell Biology, University College London)

Diagnosis of Primary Hyperoxaluria – Gill Rumsby (Biochemistry Consultant, University College London)

How Dialysis Works – Yvonne Babb (Senior Renal Dialysis Sister, Birmingham Children’s Hospital)

RaDaR and Registry Update – Melanie Dillon (Radar Administrator, Birmingham Chidlren’s Hospital)

Drug treatments for PH  – Bernd Hoppe (Nephrology Consultant, University of Bonn, Germany)

The responses to the feedback questionnaire handed out at the end of the day are presented in this report.

Hyperoxaluria Patient Information Day Version 2 Updated January 2017
Written by the Hyperoxaluria Rare Disease Group