Feb 3, 2015
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:
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.