Tag Archives: stronger together

Good News on access to drugs for rare conditions: Thank you, Minister!

Health Minister Michelle O’Neill today announced that eligible patients in the north of Ireland will receive innovative new drugs for the treatment of very rare conditions. The Minister has confirmed that drugs evaluated under the Highly Specialised Technology Programme of … Continue reading

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Living Life with Rare Disease: Taking the scare out of Palliative Care

It’s time for our Summer Meeting! This year, we are holding it, on Friday 26 June, in the Day Room at the Foyle Hospice, 61 Culmore Road, L/Derry. Our theme is “Taking the scare out of Palliative Care”. Palliative care … 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 Day

The 2013 theme for Rare Disease Day is Rare Disorders Without Borders– particularly relevant to a small island on the far west of Europe with its own international border. NI Rare Disease Partnership are co hosting a joint event with … Continue reading

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Stronger Together

Over a thousand people, holding hands across the River Foyle. Radio, local press, YouTube video. Families, volunteers, the mayor and a jazz band. A fun day with activities. There was even sunshine. What was it all about? To raise awareness … Continue reading

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