Tag Archives: awareness

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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Palliative Care: The Lets Talk About Survey

The All Ireland Institute of Hospice and Palliative Care’s “Let’s Talk About” care survey is gathering experiences, good and bad, about palliative care in the Republic of Ireland and Northern Ireland. Many people with rare diseases live with a serious … 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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Collagen – Why Do We Need It?

With support from the Research and Development Division of the Public Health Agency, and in collaboration with the Regional Medical Genetics Service and QUAMS, we are bringing  two external, internationally recognised experts on Connective Tissue disorders and translational genomic medicine, to … Continue reading

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Shine – help Shine across the bridge!

 We need 500 people to join hands across the Derry/Londonderry Peace Bridge and help raise awareness about spina bifida and hydrocephalus and also to raise funds for Shine NI. When? Saturday 5th May 11am Where? Peace Bridge, Derry/Londonderry Contact? … Continue reading

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