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 […]
Low Protein Snacks
Low Protein Snacks Download here: Snacks 2020
Taking Protein Substitutes – Clair
Taking Protein Substitutes: Is there an Emotional wall? When you start to learn how to manage your own PKU […]