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Collaboration is key to tackling rare diseases, says Poots

Northern Ireland needs to work closely with the Republic to tackle rare disease, Health Minister Edwin Poots today told a major conference in Dublin.
Thursday, 28 February 2013

The conference, “Rare Disorders Without Borders”, aims to promote collaborative and innovative ways of working between UK and Ireland and also across the EU in the field of rare diseases.

Speaking during a seminar on the Next Steps For Rare Diseases, Mr Poots said he expects a UK Plan for Rare Diseases to be published before the end of 2013. He told delegates that Northern Ireland is unique in the UK because it shares a land border with another EU country. Accessibility of services in terms of distance combined with the high standard of transport links could mean it may be preferable to develop clinical networks with the Republic as well as Great Britain to support sustainable service models for those who suffer from rare diseases in Northern Ireland.

The Minister said: “The development of an implementation plan for Northern Ireland will entail a closer engagement between Northern Ireland and the Republic. I strongly support this because there is an opportunity for the Health Departments in Belfast and Dublin, as well as our Health and Social Care Board (HSCB) and the Republic’s Health Service Executive (HSE), to work together for the benefit of their respective populations to plan for and commission effective services for rare disease sufferers and their families.

“Given the difficulties for service provision caused by the isolation experienced by rare disease sufferers, a co-operative approach between Northern Ireland and the Republic can only make common sense. This approach is not only desirable but also necessary because of the very nature of rare diseases which do not respect borders and which present a difficult challenge to service planners and providers because of the sometimes very small numbers of patients involved.”

The conference in Dublin City Hall was organised by the Rare Disease Task Force in Ireland to mark International Rare Disease day. The task force is made up of the Northern Ireland Rare Disease Partnership (NIRDP), Rare Disease UK (RDUK), as well as Ireland’s Medical Research Charities Group (MRCG), the Genetics and Rare Diseases Organisation, and the Irish Platform for Patient Organisations, Science and Industry (IPPOSI).

Also speaking at the conference was Minister Alex White TD, Minister of State for Primary Care in the Irish Government.

Notes to editors:

1. A rare disease is one that affects fewer than 5 in 10,000 of the population.
2. In 2009 the Council of Europe made a recommendation that member states should establish and implement plans or strategies for rare diseases by the end of 2013.

3. The UK-wide consultation on a UK Plan for Rare Diseases took place in 2012. A summary of the responses published by the Department of Health in London in November 2012 may be found on its website

4. Media enquiries about this press release to the DHSSPS Press Office on 028 905 20074. Out of office hours please contact the Duty Press Officer via pager number 07699 715 440 and your call will be returned.