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The next PKU meeting will take place on Tuesday 6th March at 7.30pm in the Crowne Plaza Santry. All Welcome! If you plan on coming please email info@pku.ie If there's anything you'd like added to the agenda (Or if something…

Rare Barometer Voices is a community of people living with a rare disease who are willing to participate in EURORDIS-Rare Diseases Europe surveys and studies. EURORDIS, the European Organisation for Rare Diseases, is a non-governmental patient-driven alliance of patient organisations.…

CROWNE PLAZA HOTEL SANTRY  - TUESDAY 9TH JAN 2018 – 7:30pm to 9:30pm Attending: Karen Willetts, Karen Philips, Gwen Kennedy, Dr Pastores (Mater consultant) & Marianne McGovern (Mater Dietician) ,Gary Conway, Ciara Cadwell, Sinead Kearns , Fiona Kelly Kiernan, Amy…

Please join me in congratulating Colm Galligan, who has a little girl with PKU, on his appointment to the board of IPPOSI. IPPOSI – The Irish Platform for Patient Organisations, Science and Industry – is a patient-led organisation that works…

Monday 15th January, 2018   HSE DECISION ON ONLY DRUG TO TREAT PKU THIS THURSDAY PKUAI HOPES FOR POSITIVE OUTCOME FROM PROTRACTED PROCESS   This Thursday 18th January, The National Drugs Group will conduct final review on ‘Kuvan’, the only drug currently available to treat the small…