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 […]

  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, […]

Over the next year, we want you to challenge your taste buds with a variety of fruits and vegetables. Each month we will post a new fruit or veggie for you to try and post a short blog with interesting facts, colouring pictures and recipes BraveBuds Challenge June is Suzy the Strawberry May is Piper the […]

Nutricia are holding a Low Protein Living Weekend on 4th & 5th March in the Newpark Hotel, Kilkenny with a super hero theme!!  Dr. Aoife Brinkley, Clinical Psychologist and Orla Purcell, Senior Dietitian from NCIMD will be speaking at the weekend.  Please see attached for more information and registration details – LPLW 2017 Save the Date