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.
Prescription problems - registry results
Posted Tuesday 29th October 2019
The results from the online Prescriptions Problems Registry have now been published in a peer reviewed journal. This will strenghten...Read More
Conference 2020 - Save the date
Posted Saturday 26th October 2019
Save the date for NSPKU 47th Annual Conference! The conference next year will be from Friday 28th February to Sunday 1st March 2020...Read More
Update – NSPKU Brexit related work
Posted Thursday 19th September 2019
NSPKU liaison and advocacy work around Brexit preparations for prescribed products for the PKU community. Summary of...Read More
NHS England decision regarding Kuvan
Posted Thursday 18th July 2019
NHS England has today released its decision on which new specialised treatments should be routinely commissioned for use in...Read More
New 'Exchange Ready Reckoner' card
Posted Monday 1st July 2019
A handy credit card size-card for calculating protein exchanges. To order please email - info@nspku.org An A5 version is also...Read More
Ice lollies, ice creams and sorbets - 2019
Posted Friday 7th June 2019
A mouthwatering picture book containing over 100 exchange free and exchange ice lollies, ice creams, sorbets, wafers, cones, sauces and...Read More
Access to Kuvan for people with PKU in the UK
Posted Wednesday 8th May 2019
The office of Liz Twist MP is coordinating a cross party letter to BioMarin calling for fair pricing and access for Kuvan for people...Read More
Hungry for Change
Posted Tuesday 30th April 2019
This film was first shown on 24th April 2019 at a reception in Parliament to celebrate the first anniversary of the All Party...Read More
BioMarin must prioritise the welfare of patients
Posted Friday 19th April 2019
On 16 April 2019 the BBC broadcast an investigation into certain aspects of BioMarin Pharmaceutical’s behaviour in relation to the...Read More
Easter Ideas - 2019
Posted Thursday 4th April 2019
Low protein Easter treats and gift ideas for 2019. Special thanks to Anita MacDonald and team BCH for producing this jam packed,...Read More

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