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. […]
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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 […]
Sheila – Unlocking the Treatment for PKU – Orders outside the UK
In 1951, Sheila Jones was the first person in the world to be treated for Phenylketonuria (PKU) at Birmingham Children’s […]
Book Launch! Sheila – Unlocking the treatment for PKU – UK orders
In 1951, Sheila Jones was the first person in the world to be treated for Phenylketonuria (PKU) at Birmingham Children’s […]
Watch the NHS England presentation about sapropterin (Kuvan)
NHS England will consider a policy to use sapropterin (Kuvan) for PKU next week. We have received the following message […]
PKU Baking: overcoming guilt or fear of failure…. a blog by Clair
PKU Baking… overcoming guilt or fear of failure: Following on from my blog about cooking….baking is also something I was […]