ARPKD Patient Information Day 2013

On Saturday 6th July 2013 the second ARPKD Patient Information Day was held at Birmingham Children’s Hospital.

Over 80 patients and families from across the UK and Europe attended talks by specialists in both paediatric and adult nephrology. Topics included the genetics of ARPKD, prenatal aspects of the condition and transplantation.

We were also delighted to present Tess Harris, Chief Executive of the Polycystic Kidney Disease Charity, 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.

Overview of ARPKD – Dr Larissa Kerecuk (Nephrology Consultant, Birmingham Children’s Hospital)

Genetics of ARPKD – Dr Jo Jarvis (Consultant Geneticist, Birmingham Women’s Hospital)

RaDaR and Patient Information – Melanie Dillon (Radar Administrator, Birmingham Children’s Hospital)

Consensus Guidelines Conference – Dr Larissa Kerecuk (Nephrology Consultant, Birmingham Children’s Hospital)

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

ARPKD Patient Information day 2013 version 1 updated June 2013
Written by the ARPKD Rare Disease Group