Inherited metabolic disease and coronavirus (COVID-19)

ADVICE FOR PATIENTS/PARENTS/GUARDIANS A number of you have been in touch looking for advice relating to the global Coronavirus (also known as COVID-19) outbreak.  Below is some practical, general information and links to useful, reliable websites. It is now clear that this a rapidly evolving situation, with advice from the government/HSE changing regularly.  While we […]


COVID-19

To our patients and families: We are aware that the virus COVID-19 (Corona virus) may be causing some worry and confusion among our patients and families. We recommend that you follow the advice of the HSE and Government bodies.  The following websites are updated daily where you will find the latest information about COVID-19: HSE […]


Kuvan® update.

Dear Parent/Guardian, As you may be aware, the HSE has now indicated that it will fund Kuvan® for those patients with PKU that are clearly responsive to it. Kuvan® is a drug that can help reduce phe levels in the body in a small group of patients with PKU. This funding is due to become […]


Galactosaemia Research

A multicentre collaborative paper including anonymous consented information from a total of 509 individuals with Classical Galactosaemia including 70 Irish participants which describes the outcomes of individuals treated for Classical Galactosaemia has recently been published in the prestigious journal, ‘Orphanet Journal of Rare Diseases’. Financial assistance for this study was provided by a grant from […]


International PKU Day 2019.

We will be celebrating International PKU Day again this year with our annual Mad Hatters’ Phe Party.  It will take place on Wednesday, June 19th from 10am to 1pm in the Metabolic Unit, Temple Street Hospital. This year, we would like to introduce our ‘PKU Supporters’ Club’.  It is said that it takes a village […]


News about Kuvan (Sapropterin)

In a welcome development for patients with PKU, we have been informed by BioMarin that they have received communication from the Corporate Pharmaceutical Unit in the HSE that Kuvan (Sapropterin) will be reimbursed from July 1st, 2019 under the High Tech Scheme. We will post more information as we receive it.


Recent Fundraising

The NCIMD and its patients wish to extend their sincere thanks to Vincent Murphy (Murphy’s Pub, Rathmines) and Ciaran Cosgrave for their very generous fundraised donation of €6,200. These funds will be used to upgrade facilities in our Conference Room so that it can be used as a clinical space for patient education via the Health […]




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 […]