ARPKD Family Information Days Presentations
Scroll down to view presentations from past ARPKD Family Information Days.
We held our 2014 ARPKD Family Day at the Institute of Child Health, Great Ormond Street, London.
Over 80 parents, children, professionals and volunteers from the PKD Charity attended our 2013 Information Day. The talks have been uploaded to the UK Rare Renal website.
Rare Renal is a website set up by the Renal Association for a number of rare conditions which all affect the kidneys. On the site, you can find details of the new Rare Renal Registry that has been created to gather information about patients, to help doctors and researchers understand conditions such as ARPKD better, for future research and treatments.
Around 40 parents with children came from all parts of the UK, along with doctors and scientists from the UK, USA and Germany. Dr Larissa Kerecuk (Paediatric Nephrologist BCH) had organised the venue and obtained some sponsorship. The PKD Charity funded activities for the children and with the Arran Brown Foundation arranged for Prof Lisa Guay-Woodford to travel from the US to give the keynote talk.
Prof Lisa gave the first talk on the basics of ARPKD. She is an international expert in all forms of PKD and ARPKD in particular. She practised as a paediatric doctor and nephrologist for many years, at the same time as conducting major scientific research. Prof Lisa’s presentation is available below.
Dr Pat McKiernan (BCH) gave a talk about the liver aspects of ARPKD followed by a talk on liver and kidney transplantation by the BCH surgeon, Mr Khalid Shariff. Dr Joanna Jarvis (BWH) gave a talk on genetics. Prof Pat Wilson and Prof Lisa finished with talks on research and future therapies. Prof Pat's talk is below.
The families enjoyed the day, especially meeting other parents going through similar “ups and downs” of coping with ARPKD and hearing from the professionals.
Presentations from the ARPKD Family Information Day, 30 June 2012
View the presentation by Prof Lisa Guay-Woodford
View the presentation by Prof Pat Wilson
If you weren’t able to attend and would like to know about future ARPKD events and activities, please contact us.