Author Archives: Fiona

Partnership meeting and AGM, 5 December

It’s time for our Annual General Meeting and partnership meeting- join us on 5 December at the Pavilion, Stormont, Belfast, BT4 3TA.   We’ll be presenting our annual report and accounts for 2016-2017, updating everyone on what we’ve been up … Continue reading

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Foyle & NW forum

We had a meeting of our Foyle group on Monday 6 November & were delighted to mark the start of the Stronger Together project in the area. Our Project Oficer is Tanya Boggs, and she’ll be working across NHSCT and … Continue reading

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next steps- staff!

We are delighted that we have been awarded funding by the National Lottery through the Big Lottery Fund, for a 2 year pilot project. The Stronger Together project will work to build capacity within and across the rare disease sector … Continue reading

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You couldn’t make it up…

Many of us have had those moments. The moments when we’ve been baffled/ bewildered/ outraged by our dealings with healthcare professionals: e.g. A&E telling you your case is too complicated and to talk to your GP e.g. your GP telling … Continue reading

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Access to Specialist Drugs – Share your Opinion!

NIRDP are glad to share information about a series of DHSSPS consultation events. Access to specialist drugs is vital. What do you think of the recommendations below? Can you attend a meeting and get your voice heard?   Announcement of … Continue reading

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