DHSSPSNI have today published the Northern Ireland Statement of Intent, setting out how work to implement the 51 commitments contained in the UK Rare Disease Strategy will be taken forward in Northern Ireland.
The Statement of Intent establishes a Northern Ireland Rare Disease Stakeholder Group which will steer the development of the Northern Ireland Rare Disease Implementation Plan, to be published for consultation this summer.
Read the Statement of Intent, see the 51 Commitments, and see who is involved in the Stakeholder Group here:
This is a welcome step forward in the long process of making a real difference for all those living with with rare disease in Northern Ireland. We are looking forward to the draft Implementation Plan; and we will be making sure your views are gathered and represented in developing the final Plan.
Keep in touch through this website; and make your voice heard, by sending your views to: firstname.lastname@example.org