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 firstname.lastname@example.org. 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
New treatment options – Kuvan
LTI scheme – LP foods, Protein substitutes
NSPKU Conference raffle
International PKU Day