Billy Kelleher (Cork North Central, Fianna Fail)
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183. To ask the Minister for Health his views on the National Rare Disease Plan for Ireland 2014-2018; the progress which has been made regarding the key recommendations in the plan; and if he will make a statement on the matter. [8575/15]

Leo Varadkar (Dublin West, Fine Gael)
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The National Rare Disease Plan for Ireland, which is a generic policy framework for rare diseases, was published in July 2014. One of the principal recommendations in the 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 under the National Clinical Strategy and Programmes Division of the HSE. The programme is a joint initiative between the HSE and the Royal College of Physicians of Ireland and was established with a view to improve and standardise the quality of care for patients with rare diseases in Ireland by increasing detection and prevention, facilitating early timely diagnosis, intervention and coordination of care, and increasing awareness, information and support.

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. 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 post will be located in the National Rare Disease Office.

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.