The NCIMD is celebrating International PKU Day on Wednesday 27th June with a Mad Hatter PHE party from 10am – 1pm

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 holds a special significance as it is the 100th […]

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 […]

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 […]

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 […]