All are welcome to the next PKU Association of Ireland meeting on the 28th February 2019 at 8pm in the Talbot hotel, Stillorgan, Just 10 mins from the city centre.  Come along to meet some families and adults with PKU.  Take the opportunity to chat with other people who are in the same boat!

Though it is not necessary, it is useful to have an idea on numbers attending so if you plan on coming please RSVP to If there’s anything in particular you’d like to talk about please pop it in the email.

Proposed agenda: If there is anything you’d like added please get in touch.

Brief introductions and meeting minutes

Rare Disease day

PKUAI Charity status – (Orphanet, MRCG, Rainbow)

Research on PKU –  Study in ITT and in the Mater

Patient registry

New treatment options – Kuvan

LTI scheme – LP foods, Protein substitutes

NSPKU Conference raffle

International PKU Day

Nutricia Events