About Us
The National Society for Phenylketonuria (NSPKU) is a charity founded in 1973 to support people with PKU and their families.
Press releases
BioMarin must prioritise the welfare of patients
On 16 April 2019 the BBC broadcast an investigation into certain aspects of BioMarin Pharmaceutical’s behaviour in relation to the licensing and... read more
16.04.2019 • By NSPKU - National Society for Phenylketonuria
MPs have been challenged to follow the super-restrictive diet for the...
Three year old Stanley Brown is one of about 2000 children in the UK who have phenylketonuria, (PKU for short), a metabolic disorder which is... read more
28.06.2018 • By NSPKU - National Society for Phenylketonuria
The sugar tax discriminates against people with the rare disease PKU,...
The sugar tax discriminates against people with the rare disease PKU, says national charity NSPKU NSPKU, the national charity for the rare... read more
08.06.2018 • By NSPKU - National Society for Phenylketonuria
Press Alert - Midlands MPs support children with rare disease by...
MPs from all political parties are following up a planned debate in Parliament on access... read more
06.06.2018 • By NSPKU - National Society for Phenylketonuria
Victory for Essex patient fighting for treatment
Daniel Alexander from Harwich in Essex recently contacted the patient charity National Society for Phenylketonuria (NSPKU) about problems he was... read more
22.05.2018 • By NSPKU - National Society for Phenylketonuria
​Parliamentary debate calls for an end to the deadlock in failure to...
Vicky Ford MP (Chelmsford, Conservative) spoke at an adjournment debate in Parliament this afternoon about her constituent Cait Cotter. Ten year... read more
23.03.2018 • By NSPKU - National Society for Phenylketonuria
New All Party Parliamentary Group launched to bring political attention...
Wednesday 7 March 2018 marked the launch of a new All Party Parliamentary Group (APPG) which has been established to examine the issues facing... read more
08.03.2018 • By NSPKU - National Society for Phenylketonuria
NHS will fund drug treatment for rare condition
A young boy with the rare disease phenylketonuria (PKU) is to commence treatment with the drug Kuvan, after the NHS has conceded that it should... read more
29.09.2017 • By NSPKU - National Society for Phenylketonuria
High Court rules that NHS acted irrationally in refusing life changing...
The family of a young boy with the rare disease phenylketonuria (PKU) have won an important High Court victory against the NHS in their ongoing... read more
08.08.2017 • By NSPKU - National Society for Phenylketonuria