Survey of Home monitoring for people with PKU who are 12 years old and over
Are you 12 years old or over and do you have PKU? If so, please help us collect evidence […]
Survey on Home Monitoring for Parents of children with PKU up to 18 years old
Are you a parent of a child up to the age of 18, who has PKU? If so please […]
Open Letter to British Inherited Metabolic Diseases Group about Sapropterin Testing
The NSPKU is requesting a review of the sapropterin testing pathway for people with PKU in England and we have […]
Information on NICE Kuvan Decision
NICE recommendations about sapropterin (Kuvan). What they mean for patients with PKU: Who is NICE and what has […]
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 […]
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 […]
Cooking for myself… a break from Crisps and Soup! A blog from Clair
Cooking for Myself… a break from crisps and soup! Cooking with PKU is a difficult one, as well as the […]