PKU Association meeting
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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
If you would like anything added to the agenda please let me know by emailing info@pku.ie
Your Donation Can Change a Life
Every day, families affected by PKU face overwhelming emotional, physical, and financial challenges. From costly medical food to ongoing testing and specialist care, managing PKU is a lifelong commitment. Your support helps us:
Provide vital resources to families in need
Fund education and awareness campaigns
Advocate for better access to treatment and care
Support groundbreaking research into new therapies
