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.
Signup for news of PKU Association Ireland events
Statement: The PKU Association Ireland The PKU Association Ireland (PKUAI) has been made aware that KUVAN® (sapropterin dihydrochloride) has been approved by the HSE Senior Leadership team and will be available…
Adults with PKU in Ireland please consider participating in this much needed Quality of Life Research. Research IT Tralee Research IT Tralee Q&A
UPDATE JANUARY 2019: MORE ADULTS BOTH WITH AND WITHOUT PKU ARE NEEDED TO PARTICIPATE IN THIS STUDY. PLEASE CONTACT LaurinGrabowsky@Mater.ie IF YOU CAN PARTICIPATE. PKU study recruitment poster Jan 19…
We keep this mailing list in order to share information with you that we think will be useful. We will always keep the details within this mailing list private and secure, and we will never pass this information on to third parties. You have the right to see this information, and to ask to have it amended or deleted. We believe that we have what the GDPR describes as a ‘legitimate interest’ in continuing to send emails to you. However, you can unsubscribe from our email mailing list by simply replying UNSUBSCRIBE.