Rare Barometer Voices

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.…

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Minutes of meeting 9th January 2018

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…

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IPPOSI

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…

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HSE DECISION ON ONLY DRUG TO TREAT PKU THIS THURSDAY

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…

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PKU Association meeting

The next  PKUAI meeting is on the 9th January at 7.30pm in Crowne Plaza Santry. ALL WELCOME. Though not necessary if you could let me know by email to info@pku.ie if you plan on coming that would be helpful.

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