John Deasy
Ceist:449. Deputy John Deasy asked the Minister for Health if he will provide an update on proposals to implement the recommendations of the national rare diseases plan, published in July 2014. [47970/14]
Amharc ar fhreagraTuesday, 16 December 2014
Ceisteanna (449)
Freagraí scríofa
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;
- 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.
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.
Finally, 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.