The following links have more information that may help to increase your understanding of PKU or tell you where to find further help and guidance.


The NCIMD, or the ‘Metabolic Unit’ at Temple Street hospital is a referral centre for any child diagnosed with or suspected of having a metabolic genetic disorder. –


The PKUAI Facebook page

Join our community! We share what is going on, things we care about, recipe ideas and ask questions. –


The PKU UK and Ireland Facebook page

A community of PKU families across UK and Ireland sharing ideas, swapping recipes, building campaigns and supporting each other. –

Rare Diseases Ireland

The PKU Association of Ireland is a member of Rare Diseases Ireland. Rare Diseases Ireland (formerly GRDO – the Genetic and Rare Disorders Organisation) is a non-governmental organisation with the mission to act as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare diseases. –


The National Society for Phenylketonuria in the UK – the UK have more PKU patients by population so the information here is good, but just to be aware there are things on this site that you won’t be able to access/get in Ireland –



Kuvan (sapropterin) is a drug manufactured by BioMarin for the treatment of PKU. For some patients and in combination with a low-phe diet, Kuvan can help to reduce blood phe levels. –



For lots of recipes and resource packs Nutricia’s page is very helpful –



The umbrella organization for European Phenylketonuria organizations is the ESPKU, Ireland is a member, but lots of useful information –



VitafriendsPKU is designed for people with Phenylketonuria (PKU) who have been prescribed a Vitaflo International Ltd. (Vitaflo) product by their healthcare professional.



Promin, a low protein food company, have a great website where you can order many different low protein foods.

Recent News

Cyber attack on HSE.

Wenesday 19th May 2021: Message from Metabolic Unit, Temple St : Kuvan PPN High-tech drug prescriptions including Kuvan are being affected by the cyber attack on the HSE. The normal…

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