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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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…
Irish PKU Community In Conversation series
The PKUAI ‘In Conversation series' launched on Friday 9th October with guest speaker Krystal Suchocki, PKU Adult & Registered Nurse with Classical PKU discussing: Living with PKU and Palynziq® for the…
PUBLIC LECTURE: Tuesday 21st June ‘The legacy of heroic Leitrim mother Mary Rooney Jones’
An Irish Mothers Significant Contribution To Medical History Unlocking of The First Treatment For Rare Disease PKU The Leitrim Historical Society are delighted to welcome Bernadette Gilroy, Chairperson PKU Association Ireland (PKUAI) to present a public lecture…
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