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.
A Fair Deal for People with PKU in Scotland
Posted Tuesday 12th December 2017
BioMarin's plan to submit a proposal to the Scottish Medicine Consortium (SMC) re Kuvan is likely to be submitted in February...Read More
Christmas 2017: Low Protein Goodies
Posted Sunday 3rd December 2017
A comphrensive list of sweets and treats available this year in the shops and supermarkets.   Read More
IRN-BRU Product Alert!
Posted Monday 13th November 2017
From January 2018 regular IRN-BRU will be blended with a mix of low calorie sweeteners including aspartame, a source of...Read More
NSPKU Survey - Your experience of PKU
Posted Thursday 9th November 2017
What is this survey for? We would like you to complete a survey about living with PKU. Responses will be used in support of NHS...Read More
The Complete European Guidelines on Phenylketonuria: Diagnosis and Treatment
Posted Monday 16th October 2017
Please use this link to access The Complete European Guidelines on Phenylketonuria:...Read More
Individual Funding Requests for Kuvan (BH4) Treatment
Posted Friday 29th September 2017
The NHS does not routinely commission Kuvan treatment for phenylketonuria (PKU) except for pregnant women. The National Society for...Read More
NHS will fund drug treatment after legal battle
Posted Friday 29th September 2017
  A young boy with the rare disease Phenylketonuria (PKU) is to commence treatment with the drug Kuvan, after the NHS has...Read More
New Disability Living Allowance Guide
Posted Tuesday 12th September 2017
A new comprehensive guide to assist with the completion of the Disability Living Allowance form. Read More
PKU Funding Battle
Posted Tuesday 8th August 2017
Family wins High Court challenge over drug. A summary of the case, the result, the reasons for the court's decision and the...Read More
An Introduction to Phenylketonuria
Posted Friday 7th July 2017
Natasha Macmanard is a final year undergraduate student studying BSc Media Production at De Montfort University, Leicester. Natasha is...Read More

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