Sapropterin users – We Need YOU – please help!
If you use sapropterin please help PKU researchers by completing this survey – just click on the link below OR […]
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 […]
NSPKU Race to £10K – Runner spotlight
Ellie Carnell, aged 12, is signed up to run the Kelvingrove Park 5km in Glasgow. Ellie is one of only […]
Sapropterin accessible to all age groups in Northern Ireland
The NHS in Northern Ireland has decided to allow prescribing of sapropterin (previously known as Kuvan) for responsive patients with […]
Sapropterin in Scotland
NHS Scotland allows prescribing of sapropterin (previously known as Kuvan) for PKU NSPKU is delighted to announce that NHS Scotland […]
Open Letter to British Inherited Metabolic Diseases Group about Sapropterin Testing
The NSPKU is requesting a review of the sapropterin testing pathway for people with PKU in England and we have […]
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 […]
Information on NICE Kuvan Decision
NICE recommendations about sapropterin (Kuvan). What they mean for patients with PKU: Who is NICE and what has […]
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 […]