Press Release Friday 28 June 2019

PRESS RELEASE  Friday 28 June, 2019   PKU COMMUNITY GET APPROVAL FOR ONLY PKU DRUG - KUVAN   CELEBRATIONS ON INTERNATIONAL PKU DAY   Today, Friday 28th June, On International PKU Day, The PKU Association of Ireland (PKUAI) celebrate KUVAN® (sapropterin dihydrochloride), the only personalised…

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PKU Adults needed for research at Mater

UPDATE MARCH 2019: It is now possible to complete all the testing in one single appointment so hopefully that makes it easier to participate. MORE ADULTS BOTH WITH AND WITHOUT PKU ARE NEEDED TO PARTICIPATE IN THIS STUDY. PLEASE CONTACT…

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Minutes of the meeting 28th February 2019

MINUTES OF THE PKUAI MEETING  28th FEBRUARY 2019 – THE TALBOT HOTEL STILLORGAN Attendees : Karen Willetts, Fergus Woodcock, Pauline Woodcock, Karen Lavery, Amy Meegan (Nutricia), Fiona Kiernan, Bernadette Gilroy, Mary-Ellen O’Shea (Tralee IT), Nicola Whelan (video call). European Parliament…

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Kuvan

Statement: The PKU Association Ireland The PKU Association Ireland (PKUAI) has been made aware that KUVAN® (sapropterin dihydrochloride) has been approved by the HSE Senior Leadership team and will be available in specific circumstances to our patient group for reimbursement from…

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PKUAI next meeting 28th February 2019

All are welcome to the next PKU Association of Ireland meeting on the 28th February 2019 at 8pm in the Talbot hotel, Stillorgan, Just 10 mins from the city centre.  Come along to meet some families and adults with PKU.  Take…

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