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 […]
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!!
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!
Dr Power, the metabolic SHO, won 1st place for her metabolic presentation at grand rounds in TSCUH. Well Done Dr Power!!
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 […]
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 […]
The Second National Children’s CNS Seminar was held in the AMNCH Auditorium, Tallaght Hospital on Thursday 25th May 2017. The theme of the day was “Children’s Specialist Nursing – A Changing Landscape”. The Metabolic Nurse Specialists (Celine Stenson and Maria O’Regan) won first prize for their poster presentation on the day. The title of their […]
Patient organisations and support groups who represent more than 50 families with a rare IEM are invited to apply for modest financial support for their events or parent/carer projects. This is a one-off donation and not a grant. Funds will be awarded twice a year, the first closing date is 20th April 2017. Please […]
Lucozade drinks are changing their recipe to reduce the sugar content by 50%. Aspartame will be used instead which is contraindicated for all PKU and Tyrosinaemia patients. The change in sugar content will also effect patients who use Lucozade as part of their unwell plan or management for hypoglycaemia. Please note there will not be a […]
“All I kept thinking was ‘is my son going to die when he is 11?’.” Sharon Byrne remembers the fear she felt when she heard her son’s diagnosis of a rare degenerative genetic disorder when he was just two years old. Sharon, who lives in Lucan, Co Dublin, said Karl (Swaine), who was her first child, […]