Denis Naughten
Question:587. Deputy Denis Naughten asked the Minister for Health the progress to date in implementing the national rare diseases plan; and if he will make a statement on the matter. [30261/15]
View answerThursday, 16 July 2015
Questions (587)
Written answers
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. This national office has now been established by the HSE and its work will be led by a Consultant Geneticist who will to be supported by a Genetics Counsellor and an Administrative Officer. It will, among other functions, provide up-to-date information regarding new treatment and management options, including clinical trials. In addition, the post of Information Scientist for the office will be funded jointly by the HSE and the EU Commission 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.
A new National Oversight Group has now been established by my department and its role will be as a departmental advisory group that provides oversight on the implementation of the plan.