Useful Resources
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.
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The NCIMD
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.
https://metabolic.ie
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.
https://rdi.ie/
NSPKU
The National Society for Phenylketonuria in the UK – the UK have more PKU persons 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
https://www.nspku.org/
Kuvan
Kuvan (sapropterin) is a drug manufactured by BioMarin for the treatment of PKU. For some people, and in combination with a low-phe diet, Kuvan can help to reduce blood phe levels.
https://kuvan.com
Nutricia
For lots of recipes and resource packs Nutricia’s page is very helpful
https://www.lowproteinconnect.ie/
ESPKU
The umbrella organization for European Phenylketonuria organizations is the ESPKU, Ireland is a member, but lots of useful information
https://www.espku.org/
VitafriendsPKU
VitafriendsPKU is designed for people with Phenylketonuria (PKU) who have been prescribed a Vitaflo International Ltd. (Vitaflo) product by their healthcare professional.
https://www.vitafriendspku.com/
Promin
Promin, a low protein food company, have a great website where you can order many different low protein foods.
https://www.prominpku.com/
Your Donation Can Change a Life
Every day, families affected by PKU face overwhelming emotional, physical, and financial challenges. From costly medical food to ongoing testing and specialist care, managing PKU is a lifelong commitment. Your support helps us:
Provide vital resources to families in need
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Advocate for better access to treatment and care
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