Tag Archives: living with a rare disease

Foyle & NW forum

We had a meeting of our Foyle group on Monday 6 November & were delighted to mark the start of the Stronger Together project in the area. Our Project Oficer is Tanya Boggs, and she’ll be working across NHSCT and … Continue reading

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Stronger Together Project starts work!

  Sandra Campbell, Tanya Boggs, and Fiona McLaughlin: Getting the Stronger Together Project off to a great start in Derry!  Today marks a great step forward for NIRDP and for all those affected by rare diseases in Northern Ireland, as … Continue reading

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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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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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