We are the PKU Association of Ireland. Our purpose is to help and support those affected by PKU, and other metabolic disorders that can be managed just like PKU.
We share tips, advice, stories, and recipes and generally support each other as we learn about this rare condition, helping to make it as easy to manage as possible.
Our other goal is to strive continuously for the best possible care for people with PKU. This includes raising awareness of the condition and calling for more proactive and holistic care throughout childhood and into adulthood.
We believe that with a more determined and scientific approach to treating PKU, people living with PKU will find it less of a burden on their lives and will be better able to reach their full potential.
We want this site to be a useful resource for all our PKU families and individuals, so please do get in touch if you have questions, are able to help, or have something to share.
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PKUAI has been made aware of many patients' concerns regarding the lack of action on implementing the Kuvan care pathway, and following advice from metabolic consultants, we have written to…
CALL TO ACTION: KUVAN As you are aware the situation with Kuvan in Ireland requires action. Can you please make known your dissatisfaction by contacting your local representatives. You can…
The European Parliament Cross-Party Alliance on PKU held the inaugural meeting of the Alliance in the European Parliament on 3 March 2020. ESPKU is in charge of coordinating the European…
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