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Longford campaigner Jillian McNulty ‘over the moon’ as life changing Orkambi to be made available to Cystic Fibrosis sufferers

Inspirational Jillian has been campaigning for almost three years for Orkambi, a campaign she dubbed on Twitter #mymiracle, to be made available and upon hearing this evening’s news, she enthused, “We finally have Orkambi. I’m over the moon. Finally,...

11 Apr 2017 at 21:16

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VIDEO: Longford mother and CF campaigner sends emotional message to Health Minister Simon Harris - All we want for Christmas is Orkambi

For the past four years, CF sufferer Gypsy has spent Christmas in Crumlin hospital and this year alone, she has spent eight months in hospital. Mum Hazel firmly believes if her 14-year-old daughter could gain access to the drug Orkambi that it ...

11 Dec 2016 at 22:20

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Video: Terrified Longford mother to camp outside Dáil gates to highlight plight of Cystic Fibrosis sufferers

Hazel’s daughter Gypsy Ann suffers with Cystic Fibrosis (CF) and during one of Gypsy Ann's stays in Our Lady's Children's Hospital, Crumlin before last Christmas, her mother enlisted the help of high profile personalities Brendan O'Carroll, ...

08 Apr 2017 at 23:33

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Parents of children with Cystic Fibrosis to hold candlelight vigil in Longford

The event is part of a national campaign urging the HSE and the Minister for Health to make the drug Orkambi available to those who have the disease. One of the organisers of the candlelight vigil is Drumlish woman Hazel Robinson ...

17 Feb 2017 at 15:12

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