What do you want the UK rare disease plan to include?
Those of us who live or work with rare disease in NI have an important opportunity just now. It’s the chance to make our voices heard- to get politicians and policy makers to hear what’s important to...
View ArticleStronger 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....
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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. ARVE Error: id and provider...
View ArticleWhat’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...
View ArticleLiving 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...
View ArticleGood 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...
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