Blog
Celebrating 50 Years & Counting!
NSPKU is celebrating its fiftieth year as an organisation focused on supporting people with PKU. We are using this landmark […]
Survey of Home monitoring for people with PKU who are 12 years old and over
Are you 12 years old or over and do you have PKU? If so, please help us collect evidence […]
Survey on Home Monitoring for Parents of children with PKU up to 18 years old
Are you a parent of a child up to the age of 18, who has PKU? If so please […]
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 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 […]
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 […]