News

Dietary Information

Announcements relating to dietary products.

Events

Upcoming events from the society and its friends

Publications

News about new and updated publications

General

Other news relating to PKU.
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
PKU in the news...
Posted Thursday 2nd August 2018
Link to article by journalist Sara Royle in The Westmorland Gazette - August...Read More
New NSPKU Research Grants
Posted Tuesday 17th July 2018
On International PKU Day 2018 the NSPKU were proud to announce the winners of the two new research grants. The NSPKU was overwhelmed by...Read More
Discontinued Mevalia products
Posted Friday 6th July 2018
Disappointing news from Mevalia regarding the decision to discontinue seven of their low protein products... Choco Chips / PIP code...Read More
PKU in the news!
Posted Thursday 28th June 2018
Sky News today by reporter David...Read More
NSPKU Statement on Pegvaliase and Kuvan
Posted Thursday 21st June 2018
Pegvaliase is an investigational enzyme substitution therapy for the treatment of PKU, which has been developed by BioMarin...Read More
NSPKU Sugar Tax Press Release
Posted Friday 8th June 2018
A press release from the NSPKU regarding the sugar tax has been published and can be viewed...Read More
Good news for Essex patient fighting for PKU treatment
Posted Thursday 24th May 2018
Daniel Alexander from Harwich in Essex recently contacted NSPKU to ask for help with problems he was experiencing in accessing treatment...Read More
Prescription Problems
Posted Tuesday 15th May 2018
We want to find out where there are problems in the prescribing system for people with PKU. Please report your problems here......Read More

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