Leo Varadkar (Dublin West, Fine Gael)
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One of the principal recommendations in the National Rare Disease Plan was the establishment of a National Clinical Programme for Rare Diseases. This programme will be responsible for, among others:

Mapping, developing and implementing care pathways for rare diseases;

Facilitating timely access to centres of expertise - nationally and internationally;

Developing treatment guidelines for many rare disorders; and

Developing care pathways with European Reference Centres for those ultra-rare disorders where there may not be sufficient expertise in Ireland.

In line with this recommendation, a National Clinical Programme for Rare Diseases has been established in the HSE. A Clinical Lead for this programme has also been appointed. This clinical programme will ultimately be a channel for advancing and implementing other recommendations in the plan, such as those on National Centres of Expertise for rare diseases.

The establishment of a National Rare Disease Office featured prominently in the recommendations of the Rare Disease plan. The HSE is in the process of establishing such a national office. It will, among other functions, provide up-to-date information regarding new treatment and management options, including clinical trials.

Meanwhile, the HSE and the EU Commission plan to fund jointly a rare disease post of Information Scientist in the HSE with a number of recommendations in mind. These refer to rare disease registries and the utility of data currently captured in health information systems.

The Health Identifiers Bill - the publication of which was recommended in the plan - has now been enacted. A similar recommendation on the Health Information Bill is being advanced.

My officials have convened a number of informal meetings with some members of the National Steering Group on Rare Diseases. I expect that a formal Oversight Implementation Group will be established in the near future.