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 […]
Do you live in Scotland? Tell us about PKU Clinic Services in Scotland
NSPKU is collecting information about clinic services for PKU in Scotland. Here is a short survey where you can share […]
Ask your MP to support people with PKU
Ask your MP to see NSPKU in Parliament. People living with PKU still need support for their rare condition. NSPKU […]
Sapropterin in Scotland
NHS Scotland allows prescribing of sapropterin (previously known as Kuvan) for PKU NSPKU is delighted to announce that NHS Scotland […]
Update on Palynziq/Pegvaliase for PKU
NSPKU has recently had discussions with BioMarin, the manufacturer of the injectable PKU medicine for adults called pegvaliase or Palynziq. […]
Update on availability for sapropterin for PKU
NHS England has today (17 December 2021) announced that it will make the medicine sapropterin for PKU available to […]
Questions and Answers about the NICE decision about Kuvan
Who is NICE and what are they doing? NICE is the “National Institute for Health and Care Excellence”. It […]
Watch the NHS England presentation about sapropterin (Kuvan)
NHS England will consider a policy to use sapropterin (Kuvan) for PKU next week. We have received the following message […]
Guides to help you shop for the PKU diet
Shopping for the PKU diet is always challenging. Have you looked at our new colour guides with ideas of […]
Polly writes on “PKU in the Lockdown”
PKU & Lockdown Greetings fellow travellers on the PKU road. My name is Polly and I write about my PKU […]