Recipes Banging Broccoli Balls Curried Chickpea Fritters Flippin fantastic savoury pancakes Oaty Banana Bites Tangy Tabbouleh Healthy Popsicles 10th May 2013 Games Free Food Word Search Worksheet Fruit and Veg Colouring Worksheet I Spy and Count to 10 – Low Protein Worksheet (2) PKU Word Search Worksheet What’s in my lunch box Worksheet

We are happy to inform you that we have recommenced Kuvan® responsiveness testing in line with current government guidelines on COVID-19.  A small number of patients with PKU may not need a hospital admission for the responsiveness testing and these families will have been made aware of this. However, a larger number of patients will […]

Due to the current COVID-19 (Coronavirus) situation in the country, we will not be doing any further Kuvan® responsive testing for patients with PKU until further notice.  This is due to the HSE directive to all hospitals in a collective effort to limit the spread of COVID-19 in the population. We acknowledge that this will […]

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 […]

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 […]

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 […]

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 […]

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 […]

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.

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 […]