Deputy John Deasy asked the Minister for Health if he will provide an update on the implementation of the recommendations contained in the National Rare Disease Plan for Ireland 2014-2018; and the number of times the Oversight Implementation Group has met since the plan's publication in July 2014.
REPLY (Minister Leo Varadkar):
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.
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.