21st June 7.30pm meeting at the Clayton Airport hotel ALL WELCOME

Proposed Agenda
7.30 – 8.15 Promin and Metax product presentation and Q&A
8.15 – 8.25 Kuvan – Update on HSE assessment and rare disease plan, Pegpal.
8.25 – 8.35 Low protein/protein substitute products not available in Ireland – update on official complaint from Fergus.
8.35 – 8.45 ESPKU Conference – stand, speakers for patient program, VIP to open
8.45- 8.50 Other metabolic conditions on LP Diets
8.50 – 8.55 Fund raising initiatives
8.55 – 9.00 Raising awareness of PKU – our website, media
9.00 – 9.05 Bloods
9.05 – 9.10 Any other business and set next date