General

Other news relating to PKU.
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
We Need Your Help
Posted Saturday 25th March 2017
Dear Member of Rare Disease UK We need your help. On Tuesday, MPs will meet in Parliament to debate the implementation of the UK...Read More
University of Leeds Research Study
Posted Saturday 25th March 2017
Postgraduate Researcher, Denise Hofman, from the University of Leeds is conducting an online study looking into adherence to diet and...Read More
LDA Telephone Market Research
Posted Wednesday 22nd March 2017
LDA Research are running a market research survey for carers of children with PKU on behalf of a nutrition company who are developing a...Read More
Children’s Dietetic Outpatients Service
Posted Thursday 26th January 2017
URGENT - Do you have anything to say about a Specialist Metabolic service potentially leaving the hospital and going into...Read More

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