International PKU Day
We have 3 competitions running for International PKU Day 2021 Please see photos for detail and the closing date for […]
Blog
Survey: Support for children with PKU
Sophie Cassidy is an MSc dietetic student studying at Birmingham City University. “I am currently working on a project under […]
Register to watch the next NICE Committee meeting for Kuvan
The next meeting of NICE to discuss the use of Sapropterin (Kuvan) for PKU will be on Tuesday 8 June […]
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 […]
Food Labelling Survey
Imogen Hall, working with the NSPKU, needs your help. Imogen is a dietetic student at Birmingham City University. She is […]
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 […]