All the updated news related to epidermolysis bullosa

All the news related to epidermolysis bullosa updated in real time

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National News

Gel therapy to treat ‘butterfly skin’ condition welcomed by Irish charity

A charity has welcomed positive reports of a gel therapy that helps treat an incurable skin disease, and is hoping that the Irish Government will make it available if it is approved for use. Epidermolysis bullosa (EB), or “butterfly skin”, is a rare ...

15 Jan 2023 at 12:05

National News

Cancer survivor trains for mountain trek in aid of ‘butterfly skin’ charity

A cancer survivor is training for a Kerry mountain trek to raise funds for people living with an incurable skin condition – a year after having a large tumour removed from his bowel. Mark Leaney, a long-distance runner and former footballer, also ...

30 Apr 2023 at 11:07

National News

Girl with rare skin disease excited to go to secondary school

A Dublin girl born with the most severe form of butterfly skin is excited as she prepares to go to secondary school. Casey Connors, 12, who lives in Clondalkin, has a daily battle with recessive dystrophic epidermolysis bullosa (EB), caused by ...

23 Feb 2025 at 11:00

National News

Hollywood star Colin Farrell hails friend’s courage after Dublin Marathon finish

Colin Farrell has completed a marathon with his close friend Emma Fogarty, hailing her for demonstrating “what courage is all about”. The Hollywood star ran the Irish Life Dublin Marathon for Miss Fogarty, who is Ireland’s longest survivor ...

28 Oct 2024 at 06:10

National News

Marathon bid by Colin Farrell and friend with skin disorder raises €500,000

Actor Colin Farrell has thanked the public for backing his charity marathon run for a friend with an agonising skin condition after a joint TV appearance prompted more than €400,000 in donations. The Hollywood A-lister and Emma Fogarty, ...

20 Oct 2024 at 12:45

National News

Cutting-edge medicines hoped to transform treatment of incurable skin condition

The introduction of two new cutting-edge medicines are hoped to transform the treatment of a rare incurable skin condition, a charity has said. Debra, which supports 300 people living with epidermolysis bullosa (EB) in Ireland, said ...

18 May 2025 at 11:00

National News

Viewers share thoughts on Colin Farrell's Late Late Show appearance with 'extraordinary' friend

Viewers of this week's Late Late Show were awestruck by Irish actor Colin Farrell and Emma Fogarty as the pair spoke to Late Late host Patrick Kielty about taking on the 42km Dublin Marathon later this month. Emma Fogarty is the ...

19 Oct 2024 at 09:55

National News

Irish people suffering with painful rare condition need mental health aid, charity says

A charity supporting Irish people with a rare incurable condition says sufferers are "literally crying out" for mental health support. That's according to the CEO of Debra Ireland, Jimmy Fearon, who made the call on behalf of ...

07 Feb 2023 at 10:02

National News

WATCH: Mum with fear of heights abseils from roof of Croke Park

A mum with a fear of heights has abseiled from the roof of Croke Park to raise funds for her daughter. Rachel Connors took on the challenge to raise money for Debra, the national charity which supports 12 year old Casey and ...

29 Mar 2024 at 14:59

National News

Wheelchair-user with debilitating skin condition set for charity challenge

A wheelchair-user who has constant pain caused by a rare skin disease is to join a major challenge to help fellow sufferers. Emma Fogarty was born with EB (epidermolysis bullosa), a condition which causes her skin to ...

07 Aug 2022 at 16:15

National News

Colin Farrell to run marathon to support friend with rare skin condition

Actor Colin Farrell has paid a moving tribute to a close friend marking her “miracle” 40th birthday – and revealed he will be running a marathon with her. Emma Fogarty is Ireland’s longest-surviving person battling ...

24 Jul 2024 at 06:00

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