June 28th is International PKU Day. The date has been designated International PKU Day since 2013. The date was chosen as June 28th coincides with the birthday of two PKU stalwarts; Robert Guthrie (1016 – 1995) and Horst Bickel (1918 – 2000). This year the day held a special significance as it was the 100th […]
Patient and Family News
Instructions for Reading our Publications as E-Books.
Instructions for Reading our Publications on www.metabolic.ie as E-Books for android and apple devices. Android: First you need to check your settings in Google Play Books to ensure that you have enabled PDF uploading Click on the booklet you wish to download on www.metabolic.ie and begin download. Once download is complete either open immediately by […]
Congratulations Eilish
Eilish O’Connell, our Clinical Education facilitator, won an All-Ireland medal in golf last year. She is pictured here with her golf partner, Martin Darcy. She played for her home club of Tullamore Golf Club in the All-Ireland Mixed foursomes 2017. Over 300 teams entered throughout Ireland and in September 2017 were crowned All-Ireland Champions. We […]
PKU Association of Ireland meeting March 6th, 2018.
The next meeting of the PKU Association of Ireland will take place on Tuesday, March 6th at 7.30pm in the Crown Plaza hotel, Santry. All are welcome to attend. For more information, please contact info@pku.ie Please note that this event is not organised by the NCIMD. Details are posted here to help publicise the event. […]
Connect for Care 2017
Connect for Care 2017: Diversities in Rare Diseases, Similarities in Care was attended by a number of nursing staff from the National Centre for Inherited Metabolic Disorders in Temple Street. It is a meeting aimed at nurses caring for children with lysosomal storage disorders. The meeting had three sessions, Diversity in rare diseases and the […]
PKU Association of Ireland meeting
The next PKU Association of Ireland meeting is January 9th 2018 at 7.30pm in Crowne Plaza Santry. For more information, see www.pku.ie or email info@pku.ie Please note that this event is not organised by the NCIMD. Details are posted here to help publicise the event. The NCIMD does not accept responsibility for any content, inaccuracies […]
NCPE decision on Kuvan
The team at the NCIMD (National Centre for Inherited Metabolic Disorders) has learnt that the NCPE (National Centre for Pharmacoeconomics) has recommended against the funding of Kuvan (sapropterin dihydrochloride) for the treatment of PKU. The NCIMD team is disappointed to learn of this decision. The team is aware that this treatment may have a beneficial […]
PKU Association of Ireland meeting
The next PKU Association of Ireland meeting is October 24th at 7.30pm in the Hilton Hotel, Charlemont Place, Dublin 2. For more information, see www.pku.ie or email info@pku.ie Please note that this event is not organised by the NCIMD. Details are posted here to help publicise the event. The NCIMD does not accept responsibility for any […]
Nutricia Low Protein Adult Event 2017
Nutricia have planned a Low Protein Adult Weekend for Saturday 14th – Sunday 15th October 2017. It will take place in the Mount Wolseley Hotel, Spa & Golf Resort, Tullow, Co Carlow. Please see the following flyer for more information: B17034 Low Protein Event Invite IRL_final Please note that this event is not organised by the NCIMD. Details […]
Leinster Rugby Team
A big ‘Thank You’ to the Leinster Rugby Team for calling in to St. Brigids Ward to say hello to the children, families and staff.