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. […]
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 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 […]
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 […]
Guides to help you shop for the PKU diet
Shopping for the PKU diet is always challenging. Have you looked at our new colour guides with ideas of […]
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 […]
Dietary Information for the Treatment of Phenylketonuria
The NSPKU has published a new edition of the dietary information booklet for the treatment of PKU. Click here to […]
Polly writes on “PKU in the Lockdown”
PKU & Lockdown Greetings fellow travellers on the PKU road. My name is Polly and I write about my PKU […]