Attention women and girls… Complete this survey about periods and PKU
If you are a woman or girl with PKU aged 16 or over, we would be very grateful if you […]
We need you to complete the NSPKU Survey
Please complete the NSPKU Survey If you have PKU, or you are a parent, family member, or carer of someone […]
Scottish Parliament debate calls for improvements in PKU services and treatment
NSPKU is pleased to note that on 13 January 2026 the Scottish Parliament debated a motion which considered how support […]
Campaign together for PKU – our new Parliamentary campaign
NSPKU Campaign – We Need Your Support The NSPKU is campaigning for better understanding of PKU in health and public […]
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 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 […]