Author Archives: Christine

NI Rare Diseases Implementation Plan: work in progress!

At last, work is underway on all four of the Priority Actions in the NI Rare Diseases Implementation Plan: The NI Genomic Medicine Centre is now established; staff are being recruited; and protocols for evaluation of the outcomes are being … Continue reading

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Communication and Information Review: Have your say, and make the NI Rare Disease Plan work!

Northern Ireland Rare Diseases Implementation Plan As part of the Plan we are working with the Department of Health and the HSC bodies to carry out a Communications and Information Review; and on the basis of the evidence gathered, to make … Continue reading

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Joint North South Rare Disease Day 2017/Foyle and North West Rare Disease Forum

This year, we are celebrating Rare Disease Day on 28 February jointly with our counterparts in the South, The Rare Disease Taskforce- in the palatial surroundings of the Royal Hospital Kilmainham, from 9.45 to 4 pm: see the impressive Programme below. … Continue reading

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AGM and Autumn Partnership Meeting

Our 4th AGM  will be held at 11.00 0n Thursday 20 October 2016  at the Civil Service Sports Pavilion, Stormont, Upper Newtownards Road, Belfast BT4 3SU. Registration,  tea/coffee and scones will be from 10.15. After the AGM proceedings, we will welcome guests … Continue reading

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Making our voices heard

We know that if something isn’t counted, it doesn’t count… And we all want to use our experiences and our knowledge to make positive change happen in our health and social care system.  So we are working to make sure … Continue reading

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