Tag Archives: partnership

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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What’s On: Coming Events..

Just to keep you all informed- here are two of the rare disease related events which are coming up this month! The second All Ireland Neuromuscular Research and Information Sharing Day is being held in Riddell Hall, Belfast, on 16th May … Continue reading

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Rare disease and research – find out more

Rare Disease and Research 25th September, 2014 6.30pm Postgraduate lecture theatre, Belfast City Hospital   Reception from 6pm, with food and drink 6.30 An introduction to the Rare Disease Plan  Christine Collins, NIRDP and HDANI 6.40 Huntington’s Disease  Majella McConville, … Continue reading

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Taking part

Do you want to talk about your experience of A&E? Maybe take part in Disability Pride on 20th Sept? What about influencing the NI Implementation Plan for rare disease? We can do all of them. Northern Ireland Human Rights Commission are looking … Continue reading

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Michael’s speech on living with rare disease

One of the most powerful speakers we know is Michael Holden. We were all struck by his speech at Stormont for the launch of the Living Every Day with Rare Disease survey, and are delighted that he has published it … Continue reading

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