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Announcements relating to dietary products.

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News about new and updated publications

General

Other news relating to PKU.
NSPKU position statement and Brexit activity
Posted Friday 15th February 2019
The NSPKU has communicated concerns for disrupted supplies of prescribable products for the PKU community after the planned date for the...Read More
Update on the NHS appraisal processes for Kuvan across the UK
Posted Monday 28th January 2019
  Appraisal by NICE for England and Wales In October 2018 NICE started an appraisal of Kuvan, which aimed to consider...Read More
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
Christmas 2018: Low Protein Goodies
Posted Tuesday 4th December 2018
Special thanks to "Team Birmingham" for creating and sharing their annual Christmas Low Protein Goodies list. This bumper 38...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

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