Featured Member: NI Rare Disease Partnership

NI Rare Disease Partnership

28 February is Rare Disease Day, a global event which aims to raise awareness about rare diseases and their impact on the lives of those who suffer from them.

It is estimated that 1 in 20 people will suffer from a rare disease – one which may be undiagnosed or incurable – at some stage during their life.  Rare diseases are numerous – current research puts the number at over 6,000, with 80% having identified genetic origins.

In Northern Ireland, the NI Rare Disease Partnership campaigns on the issue of rare diseases, with a vision is that no one is disadvantaged because of the rarity of their condition. The charity runs a full programme of events around Rare Disease Day.

NIRDP was formed as a result of small patient organisations and individual patients & families recognising that their needs weren’t being considered in policy and service delivery. We identified areas of commonality, no matter what the condition: need for lobbying, support for families, education, access to specialists, co-ordination of services, and organisational development.  The charity was launched on rare disease day 2012.

We work collaboratively with the Department of Health, HSC Board, Public Health Agency, the Patient Client Council, universities, and patient representative organisations to improve the services offered to people with rare diseases, through the NI rare disease implementation plan

On Monday, NIRDP and their Southern counterparts, Rare Diseases Task Force Ireland, are hosting their fourth joint North/South Conference at Queens University with the theme of ‘Nothing about us without us’ which aims to tie in with the Rare Disease Day Theme of Research: Patients are not only subjects but also proactive actors in research.

Those with rare diseases face common problems. Delays in diagnosis and a lack of access to treatment result from a lack of research into uncommon diseases. Very often this results in even poorer health outcomes than those which would have been expected.

Fiona McLaughlin, Chair of NIRDP, says that the numbers suffering from rare diseases are often underestimated.

She says: “It’s not that rare to have a rare disease. An estimated 100,000 people in Northern Ireland are affected by one. That’s the equivalent of the whole of Derry City”.

The charity has recently launched a new project, taking on staff to support and connect people across NI who live with rare disease.

Learn more about the NIRDP on their website.

If you live in the Southern, South Eastern or Belfast Trust areas you can get in touch with your coordinator at [email protected]. If you live in The Northern or Western Trust areas contact [email protected].

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