All the updated news related to orkambi

All the news related to orkambi updated in real time

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Luigi's chips impress Dermot and Dave on their search for 'Ireland's Best Chipper'

Check out the video by Dermot and Dave from Today FM as they give their verdict and rate Luigi’s famous chips for fluffiness, salt and vinegariness, temperature, bag stains, crispiness and portion size. In conjunction with their 'Ah Sure Lookit' ...

04 May 2017 at 02:18

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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. ...

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 ...

11 Dec 2016 at 22:20

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Longford woman spearheads march for Orkambi outside Dáil Eireann

On Wednesday, December 7 at 1:30pm a protest will take place outside Dáil Eireann where it is expected that close to 300 CF sufferers and their families will descend on the streets in an effort to highlight to the powers that be, the ...

21 Nov 2016 at 12:06

Local News

Fantastic that tears of fear of Longford Cystic Fibrosis campaigner Jillian McNulty have turned into tears of joy

“Tuesday’s announcement is testament to the hard work of Cystic Fibrosis Ireland, and those living with the disease. I want to commend Longford native, Jillian McNulty and indeed a former colleague of mine in Shannonside radio who ...

12 Apr 2017 at 23:10

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Longford County Council backs campaign to secure Orkambi drug for cystic fibrosis sufferers

Elected members gave their unanimous backing to ongoing efforts to secure State funding for the drug after listening to a heartfelt appeal from CF sufferer and Longford native, Jillian McNulty. She said without being able to rely ...

12 Jan 2017 at 11:50

Local News

Longford's Jillian McNulty spearheads second protest at Dáil over Orkambi delays

Jillian McNulty from Longford town, has been on Orkambi for 3.5 years and it has completely transformed her life. On Wednesday March 1, Jillian will lead a protest over Orkambi delays outside the Dáil from 1.30pm until 2.30pm. ...

28 Feb 2017 at 15:03

Local News

TD attends second Orkambi protest organised by Longford native Jillian McNulty

Deputy Murphy was speaking this week following his attendance at the second Orkambi protest at Leinster House which was organised by Longford native Jillian McNulty. “I want to commend Jillian, a Longford woman, and indeed a ...

04 Mar 2017 at 18:13

Local News

LISTEN: Longford Cystic Fibrosis sufferer Jillian McNulty humbled as four people offer to act as living kidney donors for her

Longford Cystic Fibrosis sufferer and campaigner, Jillian McNulty, was overwhelmed with emotion and shock when following an interview on The Ray D’Arcy Show, four people, strangers to her, got in touch offering to act as ...

12 Apr 2018 at 22:55

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Longford woman to spearhead third Orkambi protest outside Dáil Éireann

Another protest over the delays in securing approval for new ground-breaking drug Orkambi for people with Cystic Fibrosis in Ireland will be held at the gates of Dáil Éireann tomorrow, Wedsesday April 12 at 1.15pm until ...

11 Apr 2017 at 13:53

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Hero Award for Longford Campaigner, Jillian McNulty

The young Longford campaigner was among twenty national winners, recognised for ordinary and extraordinary acts of kindness, community, and determination that make a difference in Irish society. Jillian suffers from CF ...

11 Sept 2017 at 17:10

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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 ...

17 Feb 2017 at 15:12

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