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"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK

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You are here: Home / About RDUK/ Northern Ireland Rare Disease Partnership

Northern Ireland Rare Disease Partnership

In February 2011, Rare Disease UK, in collaboration with the Huntington’s Disease Association Northern Ireland, Motor Neurone Disease (MND) Association and the Progressive Supranuclear Palsy (PSP) Association, took the initiative to establish a new Rare Disease Partnership in Northern Ireland.

The Northern Ireland Rare Disease Partnership (NIRDP) is a unique partnership of those in Northern Ireland living with a rare disease; organisations representing them; health professionals; science and industry; health policy makers and academics. Membership includes people with over 30 different rare conditions ranging from the very rare to relatively well-recognised conditions such as Motor Neurone Disease, Spina Bifida, or Muscular Dystrophy. It is a company limited by guarantee (NI 611153; and is recognised by HMRC as a Charity (XT38294)

NIRDP believe that we are “Stronger Together”; and its aims are to advocate, educate and innovate for all those living or working with rare disease.

NIRDP is dedicated to working inclusively and constructively together to find practical ways of improving the quality of life, treatment and care for those living with rare disease across Northern Ireland.

RDUK and NIRDP continue to works closely together; constructive linkages have also been developed with rare disease organisations in the Republic of Ireland, and we hope to further cultivate and strengthen these extremely productive and beneficial relationships with our sister groups.

As NIRDP’s first major piece of work, we surveyed (with the support and facilitation of the Patient and Client Council) the experience of diagnosis of those living with or suspected of having a rare disease in Northern Ireland. This Report demonstrated the need to improve the diagnostic process. We are now working with the Department of Health and Social Services in Northern Ireland to develop the Northern Ireland Rare Disease Implementation Plan; with the Health and Social Care Board on developing a Care Pathway for Muscular Dystrophy as a template for Care Pathways for other rare diseases; and with the Public Health Agency in developing and conducting a survey and engagement process to identify the experience of care in the community for those living with a rare disease. We are working with the medical training authorities to trial a rare disease input to training for medical students and nurses and, in due course, other health and social care practitioners.

 

How to get involved

Membership of the Partnership is free, and open to anyone interested in rare disease issues. Joining will mean that you automatically get news of what is happening and the opportunity to contribute should you wish. It will also mean that the numbers of people interested in these issues is properly recorded for the benefit of politicians and service planners.

You can join the NIRDP by following the link: http://www.nirdp.org.uk/join-us/ and entering your details.

You can contact the NIRDP by e mail to ;

Or by writing to The Secretary, 6 Ava Crescent, Belfast, BT9 6DU