Other news relating to PKU.
Brexit considerations for people living with PKU
Posted Wednesday 9th January 2019
NSPKU position statement and Brexit activity: The NSPKU have been reviewing the preparations being made by government for the...Read More
NHS England interim decision on sapropterin (Kuvan) for PKU
Posted Friday 21st December 2018
In July 2018, NHS England decided to develop an interim policy for the use of sapropterin for PKU. The draft policy recommended the use...Read More
Westminster Hall Debate
Posted Thursday 15th November 2018
Access to treatment, support and innovative new medicines for phenylketonuria patients was debated in the House of Commons on Tuesday...Read More
NSPKU Survey results - second paper
Posted Friday 2nd November 2018
The second peer reviewed paper with results from the NSPKU survey has now been published. An additional section of the survey asked nine...Read More
NSPKU Survey... the results
Posted Thursday 25th October 2018
The first peer reviewed paper reporting the results of the NSPKU survey findings for children and adults with PKU has now been...Read More
How do you see the future in terms of treatment for PKU?
Posted Monday 8th October 2018
Dietitian and PKU Guidelines Co-ordinator, Annemiek Van Wegberg from The Netherlands, has produced a European questionnaire looking at...Read More
NSPKU statement on NHS England draft interim Kuvan policy
Posted Tuesday 2nd October 2018
NHS England has prepared a draft interim policy for the use of sapropterin (Kuvan) for PKU. The policy is likely to be considered by NHS...Read More
The legacy of Professor Horst Bickel
Posted Monday 3rd September 2018
A life of courage for lives with hope. The legacy of Professor Horst Bickel. The past, present and future of PKU...Read More
NSPKU statement on the use of Kuvan in Scotland
Posted Monday 13th August 2018
The Scottish Medicines Consortium (SMC) has today announced that they have rejected the submission for the routine funding of Kuvan in...Read More
NSPKU statement on NHS England Kuvan policy
Posted Saturday 11th August 2018
The NSPKU have recently been informed by NHS England that it will develop a policy for using Kuvan (sapropterin) with the intention that...Read More