Our next PKU Association of Ireland meeting is Monday 7th October at 7.30pm at the Hilton Hotel, Charlemont Place, D2. All welcome.
ALL WELCOME: Please email info@pku.ie if you plan on attending. It is not necessary to rsvp, but it helps to have an idea of numbers.
Proposed agenda: (If there is anything you would like to add to the agenda please do not hesitate to get in touch.)
Patient registry
PKU research prioritisation workshop
PKU Research participation
Brexit
Access to treatment – lp foods and substitutes, medicines etc
Raising awareness of PKU- Living lens, Live Unlimited
Gene Therapy Clinical Trial UK
ESPKU Conference and lobbying EU parliament
Upcoming events: Nutricia, Vitaflo etc