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 […]
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 […]
NSPKU Survey for children with PKU aged 18 or under (for carer/parent to complete)
This survey is for children aged 18 or under (the carer/parent or guardian to complete) and the survey is about […]
NSPKU Survey for people with PKU aged over 18
This survey is for everyone with PKU aged over 18 (or their carers, parent or family member) and the survey […]