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 […]
New guide to PKU Food Exchanges
This useful picture guide to PKU food exchanges has been compiled by Birmingham Children’s Hospital. Click here: https://nspku.org/download/food-exchanges-list/
Low protein baking guide
Baking is a fun activity for both adults and children. Have a look at this full colour guide to baking […]
Help with research about children’s experience of school food for PKU
Hannah Jones, working with the NSPKU, needs your help. Hannah is a dietetic student at Birmingham City University. She is […]