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 […]



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 […]



PKU Association of Ireland meeting

The next PKU Association of Ireland meeting is on the 28th August 2017 at 7.30pm in the Hilton Dublin Hotel on the canal.  http://www3.hilton.com/en/hotels/ireland/hilton-dublin-DUBDUHN/index.html   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 […]


Congratulations Orla

Ms Orla Purcell,  our senior metabolic dietitian, won 1st place for her oral presentation on growth patterns in the Irish HCU population at the Temple Street Bi- Annual Research, Clinical Audit and QI Day. Well Done Orla!!    


Temple Street Bi-Annual Research, Clinical Audit and QI day

There were lots of posters and presentations at the Temple Street Bi-Annual Research, Clinical Audit and QI day by the metabolic team. Congratulations to all involved, Orla Purcell (senior metabolic dietitian), Emma Lally (metabolic dietitian), Yvonne Rodgers (Senior Clinical Psychologist), Dr Jennifer Finnegan, Rachel Finnegan (ERT co-ordinator) and Amy Craddock (senior dietitian). Well done to all!



HCU Patient-Expert Meeting, Brazil

The 2nd International Homocystinurias Patient-Expert Meeting will take place on September 4th 2017 in Rio de Janeiro, Brazil. The meeting is scheduled as a pre-meeting to the 13th International Congress of Inborn Errors of Metabolism. See the following for more details: www.hcunetworkaustralia.org.au/event/patient-expert-meeting-rio-2017/ Please note that this event is not organised by the NCIMD. Details are […]


Change in target Phe levels for PKU management

The European Guidelines for Phenylketonuria were recently published. These guidelines were developed by a group of 17 well known European PKU experts. The group was made up of biochemists, dietitians, metabolic paediatricians, metabolic adult physicians and psychologists. In line with these new European Guidelines as of July 1st 2017, we are changing our target phenylalanine […]