General

Other news relating to PKU.
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
New All Party Parliamentary Group launched to bring political attention to the rare disease PKU
Posted Thursday 8th March 2018
A press release from the NSPKU has been published and can be viewed here..  ...Read More
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
NSPKU Survey - Your experience of PKU
Posted Thursday 9th November 2017
SURVEY CLOSING SOON! PLEASE COMPLETE... What is this survey for? We would like you to complete a survey about living with...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
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

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