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Category: Campaign

Information on NICE Kuvan Decision

20/08/202123/08/2021 Suzanne Ford

  NICE recommendations about sapropterin (Kuvan). What they mean for patients with PKU:   Who is NICE and what has […]

Adult, Campaign, Children, News
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

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

  • Save the Date: Online conference & AGM Sunday 21st November 2021
  • Information on NICE Kuvan Decision
  • 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

Recent Comments

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