Family Conference 2022 – Save the Date!
Dates for the 2022 NSPKU Family Conference have now been agreed – Friday 30th September to Sunday 2nd October […]
Helpline: 030 3040 1090
Dates for the 2022 NSPKU Family Conference have now been agreed – Friday 30th September to Sunday 2nd October […]
NSPKU has recently had discussions with BioMarin, the manufacturer of the injectable PKU medicine for adults called pegvaliase or Palynziq. […]
NHS England has today (17 December 2021) announced that it will make the medicine sapropterin for PKU available to […]
NICE recommendations about sapropterin (Kuvan). What they mean for patients with PKU: Who is NICE and what has […]
Who is NICE and what are they doing? NICE is the “National Institute for Health and Care Excellence”. It […]
This survey is for children aged 18 or under (the carer/parent or guardian to complete) and the survey is about […]
This survey is for everyone with PKU aged over 18 (or their carers, parent or family member) and the survey […]
In 1951, Sheila Jones was the first person in the world to be treated for Phenylketonuria (PKU) at Birmingham Children’s […]
In 1951, Sheila Jones was the first person in the world to be treated for Phenylketonuria (PKU) at Birmingham Children’s […]
NHS England will consider a policy to use sapropterin (Kuvan) for PKU next week. We have received the following message […]