Tag Archives: working with rare diseases

Rare Disease Day 2016 Patient Voice and Empowerment

Rare Disease Day 29 February is getting close!  Here are the full programmes for the Conference in Riddel Hall, and for the Reception in the Long Gallery at Stormont; follow the links in the post below to register NOW The … 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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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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It’s Rare Disease Day — time for a launch or two!

Local advocates call for action on international Rare Disease Day as shocking new report highlights shortcomings in Health and Social Care for people with rare diseases A new report launched by the Patient and Client Council at Stormont today to … Continue reading

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Welcome to the NI Rare Disease Partnership

Who are we? We are a not for profit organisation, bringing together those living with a rare disease and organisations representing them: clinicians and other health professionals; researchers and producers of specialist medicines and equipment; health policy makers and academics. … Continue reading

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