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 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...Read More
Will your MP take up the PKU Diet for a Day challenge?
Posted Thursday 26th April 2018
The All Party Parliamentary Group for PKU has 30 MPs as members. Some MPs have pledged to raise awareness by following the PKU Diet for...Read More
My PKU Story
Posted Monday 9th April 2018
This year International PKU Day, Thursday 28th June 2018 is more special than ever before. It is the 100th anniversary of Horst...Read More
NSPKU Launch New Research Grants
Posted Friday 23rd March 2018
At the 45th Annual Conference 2018 the NSPKU were pleased to announce the launch of two new research grants worth £10,000 each....Read More
Parliamentary debate calls for an end to the deadlock in failure to provide drug treatment for the rare disease PKU
Posted Thursday 22nd March 2018
Press release issued Thursday 22nd March 2018. Vicky Ford MP (Chelmsford, Conservative) spoke at an adjournment debate in Parliament...Read More
Statement to NSPKU members regarding the appraisal of Kuvan by NHS England
Posted Thursday 15th March 2018
In summer 2017 NHS England stated that the policy decision to not provide Kuvan treatment would be reconsidered. Subsequently a...Read More
Spring Draw Winners
Posted Thursday 8th March 2018
Thank you to everyone who sold raffle tickets for the NSPKU's annual Spring Draw. Special thanks go to Linda Dale who sold an...Read More

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