General

Other news relating to PKU.
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
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
Call For Action: 6 key demands for change
Posted Wednesday 5th July 2017
Following a very successful awareness event in Parliament on International PKU Day 2017 the NSPKU would like to build on the support...Read More
International PKU Day 2017 Presentation
Posted Monday 3rd July 2017
Following a successful event in Parliament the power point (below) provides a summary of the talks we presented to the MPs and invited...Read More

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