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The National Society for Phenylketonuria (NSPKU)

The National Society for Phenylketonuria (NSPKU)

NSPKU is the only UK charity dedicated to improving the lives of people living with the rare condition PKU. Our goal is to support individuals and families living with Phenylketonuria across the UK.

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Category: Campaign

Campaign for PKU – tell your MP about the impact of PKU

01/10/2024 kate learoydLeave a Comment on Campaign for PKU – tell your MP about the impact of PKU

Our charity NSPKU has been campaigning in Parliament for understanding and support for PKU since 2017.  This started by people […]

Campaign

Update on Palynziq/Pegvaliase for PKU

25/03/2022 kate learoyd

NSPKU has recently had discussions with BioMarin, the manufacturer of the injectable PKU medicine for adults called pegvaliase or Palynziq. […]

Campaign, Adult

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 […]

News, Adult, Campaign, Children
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

[smartslider3 slider=7] When we started our campaign for better care for PKU in Parliament we really wanted to get across […]

Campaign, Diet

Recent Posts

  • Campaign for PKU – tell your MP about the impact of PKU
  • Do you live in Scotland? Tell us about PKU Clinic Services in Scotland
  • NSPKU Race to £10K – Runner spotlight
  • NSPKU Race to £10K
  • PKU “S.P.O.R.T PROJECT”

Recent Comments

    For more information use our Contact page or helpline: 030 3040 1090

     

    For PKU Unplanned Pregnancy Emergency Advice please contact your local centre.

     

    You can also use our documents library to access lots of important information

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