Author Archives: Fiona

Rare Disease Day!

Rare Disease Day takes place on the last day of February each year (29th February itself being a rare day). Rare Disease Day is about raising awareness amongst the general public and decision-makers about rare diseases and their impact on … Continue reading

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An Honour

We are delighted to share the news that our volunteer Christine Collins, has received the honorary award of MBE from Her Majesty The Queen today for her outstanding services to people with rare diseases. Christine, a retired civil servant, is … Continue reading

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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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