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Category: Campaign

NHS

Watch the NHS England presentation about sapropterin (Kuvan)

22/07/202027/07/2020 kate learoyd

NHS England will consider a policy to use sapropterin (Kuvan) for PKU next week.  We have received the following message […]

Campaign

Survey on Eating out in Restaurants or Cafes

30/04/202030/04/2020 Suzanne Ford

Grace Poole, working with the NSPKU, needs your help. Grace is a dietetic student at Birmingham City University. She is […]

Adult, Campaign, Children, Diet, Young people

Talking PKU in Parliament

17/02/202017/02/2020 kate learoyd

When we started our campaign for better care for PKU in Parliament we really wanted to get across the real […]

Campaign, Diet

Liam talks about his career ambitions and PKU advocacy

17/02/202021/02/2020 kate learoyd

  Hi, I am Liam and I am 20 years old and I have PKU, I live in St. Helens […]

Adult, Campaign, Young people

Recent Posts

  • Questions and Answers about the NICE decision about Kuvan
  • NSPKU Survey for children with PKU aged 18 or under (for carer/parent to complete)
  • NSPKU Survey for people with PKU aged over 18
  • Sheila – Unlocking the Treatment for PKU – Orders outside the UK
  • Book Launch! Sheila – Unlocking the treatment for PKU – UK orders

Recent Comments

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