CALL TO ACTION: KUVAN As you are aware the situation with Kuvan in Ireland requires action. Can you please make known your dissatisfaction by contacting your local representatives. You can find their contact details at https://www.whoismytd.com It would be helpful…
PKUAI are holding a research prioritization workshop followed by a meal at the Clayton Airport Hotel on the 30th November at 4pm. There are limited places and they will be allocated on a first come first served basis. RSVP is…
Please see attached statement from the European Society of PKU https://www.espku.org/2019/11/05/treatment-for-adult-metabolic-patients-is-insufficient/ ESPKU-Statement-on-Transition-and-Adult-Care Nov 19
PKU Association of Ireland’s Patient Portal. Don’t be left behind, get involved in this exciting initiative! We are all aware of the incredible medical advances taking place around the world which PKU treatment is very much so a part of.…
MINUTES OF THE PKUAI MEETING 7th October 2019 – The Hilton Hotel D2 Attendees : Karen Willetts, Fergus Woodcock, Pauline Woodcock, Karen Lavery, Bernadette Gilroy, Karen Philips, Killian Fitzgerald, Gavin O’Donnell, Colm Galligan Patient registry: it was agreed that in…