News & Events
Stay connected with the latest updates from the PKU Association of Ireland. Here you'll find inspiring stories, important announcements, upcoming events, and community highlights - all dedicated to supporting individuals and families living with PKU and other metabolic conditions. Whether it's a public lecture, a webinar, or a national campaign, this is where our shared journey continues to grow.
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SAVE THE DATE PKU Adult Online Webinar
Ensure your future health PKU Adult Online Webinar* – ensuring your future health! Date: Wednesday 14th Sept @8pm Registration: Details TBC soon The PKU Association of Ireland (PKUAI) is delighted to announce it is hosting […]
26 August 2022
Est. Reading: 1 minute
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PUBLIC LECTURE: Tuesday 21st June ‘The legacy of heroic Leitrim mother Mary Rooney Jones’
An Irish Mothers Significant Contribution To Medical History Unlocking of The First Treatment For Rare Disease PKU The Leitrim Historical Society are delighted to welcome Bernadette Gilroy, Chairperson PKU Association Ireland (PKUAI) to present a public lecture on Leitrim lady Mary Rooney […]
20 June 2022
Est. Reading: 4 minutes
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Cyber attack on HSE.
Wenesday 19th May 2021: Message from Metabolic Unit, Temple St : Kuvan PPN High-tech drug prescriptions including Kuvan are being affected by the cyber attack on the HSE. The normal process in prescribing Kuvan through […]
17 May 2021
Est. Reading: 1 minute
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INVESTIGATIONS OF HEALTHCARE DELIVERY TO HEALTHCARE WITH PHENYLKETONURIA (PKU)
Please find attached information on a study taking place in the Mater. It is hoped that the study will help the NCIMD-Adult Service Team better understand the needs of their patients and facilitate ways to […]
29 April 2021
Est. Reading: 1 minute
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PKUAI Website Update
Community survey to assist shaping new PKUAI website The PKU Association of Ireland (PKUAI) is a small voluntary group set up to support patients and carers of patients with PKU in Ireland. The PKUAI […]
6 April 2021
Est. Reading: 1 minute
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Short Survey for a submission to the National Centre for Pharmacoeconomics (NCPE) in support of a recent application requesting reimbursement of Palynziq
Dear adults with PKU (16 years plus) and parents/caregivers of adults with PKU (16 years plus), We would like to invite you to complete a short (approximately 10 minutes) survey to ascertain if there is a […]
23 November 2020
Est. Reading: 1 minute
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PKU & Gene Therapy Market Research
PKU & Gene Therapy Market Research A research study is seeking PKU Adults & PKU carers / parents interested in taking part in market research about Gene Therapy for PKU. The study aims to better understand […]
7 October 2020
Est. Reading: 1 minute
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Irish PKU Community In Conversation series
The PKUAI ‘In Conversation series' launched on Friday 9th October with guest speaker Krystal Suchocki, PKU Adult & Registered Nurse with Classical PKU discussing: Living with PKU and Palynziq® for the past 10 years. To watch […]
6 October 2020
Est. Reading: 1 minute
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Press release 28 June 2020
PKU "LIVING IN CHALLENGING TIMES” PKU COMMUNITY UNITES FOR INTERNATIONAL PKU DAY Today, Sunday 28th June 2020, The PKUAI (PKU Association of Ireland) join with PKU communities throughout Europe and across the globe to celebrate International PKU Day […]
28 June 2020
Est. Reading: 6 minutes
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“Living with PKU in Challenging Times”
Live Unlimited PKU Presents “Living with PKU in Challenging Times”‘A Live Panel Event on Facebook’. This Sunday 28 th June @ 1pm The current pandemic is affecting how we go about our daily lives. For […]
26 June 2020
Est. Reading: 2 minutes
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