Category Archives: Uncategorized

Encompass Programme Update

For anyone interested in progress on the health transformation strategy, please find attached a link at the bottom of the page to an update on NICVA’s web site from the Department of Health.   The Update covers the Encompass Programme … Continue reading

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Palliative Care Talks: Children’s Palliative Care with Lucy, Sharon & Steph

It’s great to see that #StrongerTogether” is evident everywhere. Open discussions about palliative care help demystify the misunderstanding that it is about dying when in reality it is more often about living. Thanks for this inspiring insight into palliative care … Continue reading

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QUEENS UNIVERSITY SEEKING INPUT BY THOSE AFFECTED BY RARE CANCERS

  Are you someone living with rare cancer, or a carer of someone who is? Are you interested in shaping and improving information and support for people living and working with rare cancer? Then get in touch by the 1st … Continue reading

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The [ART] in Family: An interview with Susie Rea

Susie Rea, one of the recent winners at our poster competition, held during the March conference, is reaching out for participants who can help her with her photography work as part of her PhD studies. Her focus is on those … Continue reading

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Foyle and North West Forum meeting update

The Foyle and NW forum (NIRDP) meeting took place on Saturday 19th May and it was great to welcome old and new faces to the group. There was lively discussion about issues affecting those with rare diseases with particular reference … Continue reading

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