The Organ Donation (Deemed Consent) Bill passed its final stage in Parliament (26 February)

The Bill is expected to become law in Spring 2020. From then, all adults over 18 in England will be considered as a possible organ donor when they die, unless they choose to opt out or are excluded. This is commonly referred to as an ‘opt out’ system.

The PKD Charity, Arran Brown Rainbow Foundation and University of Wolverhampton are jointly funding a pioneering 3-year ARPKD research project at Wolverhampton and UCL London.

The PKD Charity has awarded £20,000 to UCL Centre for Nephrology Royal Free Hospital to fund a specialist research nurse to help develop the ADPKD and ARPKD RaDaR paediatric patient databases.

Laura’s Story

“From the moment Ethan arrived,” Laura remembers, “we were in love with our perfect little boy. But within a couple of weeks, the doctor noticed his tummy was larger than normal. An ultrasound showed he had large kidneys. They sent him to a specialist hospital where he was diagnosed with ARPKD.”

The Role

The Polycystic Kidney Disease Charity is seeking to appoint a Trustee with knowledge and experience of ARPKD – autosomal recessive polycystic kidney disease – from a patient, parent, family member or carer perspective.

Results from the DRINK study show that it will be possible to run a large trial testing the effect of high water intake on ADPKD progression.