The Northern Ireland government’s draft implementation plan for the UK Rare Disease Strategy was launched for public consultation on 27th October at a well attended second AGM and Autumn Seminar of the Northern Ireland Rare Disease Partnership held in the Stormont estate in East Belfast.
Speakers included Alastair Kent OBE, the chair of the UK Rare Disease Forum, who outlined progress towards implementing the UK strategy across England, Wales and Scotland. Christine Collins, the chair of the Northern Ireland Rare Disease Partnership, highlighted significant activities in raising rare disease issues over the past year including growing collaboration across the two political jurisdictions on the island of Ireland,  at government, health services and voluntary sector levels. Philip Watt, the chair of the Republic of Ireland’s Rare Disease Taskforce, explained that the South’s implementation plan was launched in July, with a new national rare disease clinical programme now up and running. The South’s government has committed to establishing a national Rare Disease Office which will be located at the new National Children’s Hospital due to open in Dublin in 2019. He too stressed the importance of building collaborative links and sharing of health and research services North and South across Ireland, as well as with Britain and Europe.
The recently appointed Stormont health minister Jim Wells also acknowledged the importance of developing collaborative arrangements with health services outside the North of Ireland in responding to rare diseases. Given the small size of the North’s population and the massive budgetary pressures the North’s health service is operating under, there’s no doubt that the ambitions of the Rare Disease Strategy won’t be adequately met without a real political commitment to developing and sharing services across the island of Ireland.
After announcing the start of the 12-week consultation period on the implementation plan, Jim Wells returned to the microphone to point out he’d just read a live tweet from a seminar attendee which described him as ‘an enthusiastic naturist’. He clarified that in his earlier remarks he’d actually boasted of being an enthusiastic naturalist, which he stressed was rather a different thing!