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 […]
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The National Society for Phenylketonuria (NSPKU)
NSPKU is the only UK charity dedicated to improving the lives of people living with the rare condition PKU. Our goal is to support individuals and families living with Phenylketonuria across the UK.
The NSPKU is requesting a review of the sapropterin testing pathway for people with PKU in England and we have […]
NICE recommendations about sapropterin (Kuvan). What they mean for patients with PKU: Who is NICE and what has […]
This survey is for children aged 18 or under (the carer/parent or guardian to complete) and the survey is about […]
This survey is for everyone with PKU aged over 18 (or their carers, parent or family member) and the survey […]
In 1951, Sheila Jones was the first person in the world to be treated for Phenylketonuria (PKU) at Birmingham Children’s […]
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: Following on from my blog about cooking….baking is also something I was […]
Cooking for Myself… a break from crisps and soup! Cooking with PKU is a difficult one, as well as the […]
Low Protein Snacks Download here: Snacks 2020
Taking Protein Substitutes: Is there an Emotional wall? When you start to learn how to manage your own PKU […]