NSPKU has recently had discussions with BioMarin, the manufacturer of the injectable PKU medicine for adults called pegvaliase or Palynziq. BioMarin has stated that currently it has not applied for a UK license for Palynziq which would allow the medicine to be used in the UK and that they have no immediate intention of applying for a license in the UK.

NSPKU is committed to campaigning for access to all safe and effective medicines for PKU.  We ask BioMarin to engage constructively with the NHS and UK authorities to allow patients to benefit from this treatment.  We have asked BioMarin to apply for an UK license for Palynziq without delay.

NSPKU is currently awaiting a full written statement from BioMarin about their plans for Palynziq in the UK which we will share when it is received.