General

Other news relating to PKU.
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
General Debate on NICE Appraisal Processes for Treatments for Rare Diseases
Posted Friday 22nd March 2019
A two hour Backbench Business debate took place on Thursday 14th March 2019 in the House of Commons led by the chair of the All Party...Read More
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
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

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