AQW 1418/16-21

Mrs Naomi Long
Alliance Party
East Belfast

Tabled Date: 20/06/2016
Answered On Date: 08/07/2016
Priority Written: No

Question:
To ask the Minister of Health for an update on the Northern Ireland Rare Diseases Implementation Plan, and for her assessment of whether the plan would be implemented should the UK vote to leave the EU.

Answer:

My Department is committed to the full implementation of the Rare Diseases Implementation Plan subject to available resources. We have progressed one of the priority actions in the Plan to establish a Genomics Medicine Centre (GMC) based in the Belfast Trust. Funding has been secured for the GMC and contractual arrangements are being finalised with Genomics England Limited to allow local participation in the 100,000 Genomes Project to commence in autumn this year. Funding is also in place to progress the remaining priority actions from the Plan, including scoping a communications review, training needs analysis and a local register for rare diseases.

The Implementation Plan contains an additional theme, not contained in the Plans produced by the Health Authorities in Britain, which recognises the benefits of collaboration on rare diseases throughout Ireland and commits my Department to working with the Department of Health in the South to achieve this. I am determined to deliver this commitment alongside all beneficial All-Ireland approaches to health and social care by addressing the uncertainties and challenges that now exist following the referendum.