At DEBRA Ireland, we prioritise the voices of people living with EB to provide the best support and make the greatest impact. The EB Expert Panel are individuals with EB, family members of those with EB or family members who have lost a loved one to EB. The panel advises the DEBRA Ireland Research and Family Support teams.

The workshops occurred in person last November, with an online version taking place at a later date for those unable to attend. This workshop is envisioned to occur twice a year, allowing the panel to have their voice heard within various DEBRA projects. This is known as Patient and Public Involvement (PPI) and improves the quality of work DEBRA Ireland do for the EB community in Ireland and worldwide. It allows the ever-changing needs of this community to be at the forefront of our team’s minds as they work towards improving the quality of life of those who live with EB in Ireland.

“It was lovely to finally meet people, chat and talk about EB and the need of patients.” – a member of our wonderful EB Expert Panel.


As a result of the panel, DEBRA Ireland’s revised research priorities include:

  • Wound Healing
  • Pain Management
  • Gene Therapy
  • Medical Devices – with a particular focus on an EB shoe
  • Psychosocial/Mental Health studies
  • Cell Therapy

And the research we fund/support must have direct patient impact by either…

  • Furthering the development of a potential treatment
  • Identifying potential targets for a potential treatment
  • Contribute to the overall knowledge of EB to help develop future treatments
  • Improve quality of life for those with EB and their families

Family support

Our Family Support Team had a number of specific projects they wanted the panel to provide input on for the coming year, like developing an Online EB Hub. The EB Hub will be an online platform where families will be able to easily access information and support on EB. The platform will be shaped collaboratively with the panel.

The psychological and social impact of EB has shaped the decision to create a support hub for EB in Ireland, as the Family Support team recognise there are many more aspects of life that can be impacted by EB in addition to the physical challenges. It is hoped that the Hub will provide quick and easy to access supports, while being modern and simple to use.

You can download the full report here

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A brave teenager battling a crippling skin disease has thanked big-hearted RTE viewers after more than €325,000 was raised for ‘Butterfly skin’ charity, DEBRA Ireland.

Claudia Scanlon, 19, and DEBRA ambassador Johnny Sexton, generated the huge public donation as they appeared on last Friday’s Late Late Show to talk about the painful and debilitating condition, epidermolysis bullosa (EB). Claudia, from Terenure, Dublin, has the severe form of the genetic disorder, which has left 80% of her body covered in blisters – and needs a wheelchair because it is too painful for her to walk.

She told host Ryan Tubridy that DEBRA Ireland is desperately trying to fund research into finding a cure for the disease, which affects around 300 people in Ireland.

“I was born with a genetic skin condition that affects me both internally and externally,” said Claudia, whose hands and toes are now fused because of the illness.

“It is one of the worst conditions out there and I wouldn’t wish this upon my worst enemy.

“It is a living hell and that is the only way that I can describe it.”

But despite the immense problems caused by her EB, Claudia told Tubridy that she tried to remain positive.

“I don’t want to sit in a corner and cry about it,” she said. “I don’t want to throw my life away. I have a life to live and I want to do the best I can.”

RTE viewers responded on Friday night and over the weekend by donating €325,000 after a link to the charity’s website was broadcast during the show.

“This is a tremendous amount of money, and I cannot thank everyone enough for their generosity,” said Claudia. “This fundraising means so much – not only to me but to the whole EB community.

“The money raised will hopefully help fund a cure. We love you all and can’t thank you all enough.”

During the show, Ireland rugby captain Sexton, who has worked with the charity for 12 years, praised Claudia for her bravery.

“The first thing that you see it how incredibly brave they (EB patients) are.. it makes you feel a little bit bad about yourself when you come home with an injury or after a bad game and you’re giving out about the world.

“What they go through is worlds apart, and their families as well, Claudia’s mum and dad are here tonight and what they do for her is incredibly inspiring.” DEBRA Ireland CEO Jimmy Fearon said he wanted to thank everyone who helped raise the six-figure sum for the charity.

“Once again, the Irish public have shown how incredibly generous they are. We cannot thank them enough,” he said.
Tubridy, on his RTE 1 radio show today, described the public’s response to the fundraising appeal as “extraordinarily generous”.

EB is caused by missing proteins which bind the skin together. As well as funding medical research to find a cure for the disease, DEBRA Ireland also supports patients and their families with day-to-day care and psychological supports.

If you missed your chance to donate, you can still do so at:

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Press release – February 6th, 2023

People diagnosed with a painful skin condition are “literally crying out” for mental health support as they struggle to manage the incurable disease.   

Around 300 children and adults in Ireland live with distressing epidermolysis bullosa (EB), also known as Butterfly Skin, and, according to charity DEBRA Ireland, many are finding the symptoms overwhelming.  

The charity, which supports patients and their families, says an increasing number of them are presenting with mental health problems fuelled by issues including stress, self-image and lack of nursing resources. 

Not everyone with EB bears the visible signs of the disease and many have faced the indignity of being judged for parking in disability bays. 

Now DEBRA Ireland is insisting the Government ring-fences €160,000 a year to pay for one full-time adult psychologist to help EB patients and their carers deal with the stress, isolation and loneliness that living with a rare disease brings.   

“EB is a hugely distressing condition and in the most extreme cases, the treatment involves extremely painful bandage changes,” said Jimmy Fearon, CEO of DEBRA.  

“These and other patients face additional stressors, such as feeling they may be a burden on their families and the lack of nursing resources, ramps up the pressure.” 

Unfamiliarity with the disease amongst healthcare workers is another common problem faced by people with EB, and having to explain their symptoms on a regular basis adds to the stress of living with a genetic condition.   

The rare and progressive disorder can cause the skin and internal lining of the body to blister at the slightest touch.   

Mr Fearon said the State funding should provide dedicated mental health support people living with EB nationwide and their carers. 

“DEBRA Ireland asked for a psychologist for people with EB in our pre-Budget submission last October, but the call went unanswered,” he said.  

“But just because the Government ignored our plea, doesn’t mean the need is no longer there.   

“Far from it. People with EB are literally crying out for help with their mental health as they struggle to cope with stress, feelings of loneliness and isolation.  

“Carers and families also need support. It is hard to imagine anything more upsetting than listening to your child scream in agony for hours when their wounds are being dressed.  

“But this is the reality for parents of children or adults with the most severe form of EB.” 

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EB, also known as Butterfly Skin, is a rare, genetic condition which causes the skin to blister at the slightest touch.

Patients need their wounds regularly dressed with bandages – either every 24 or 48 hours – to prevent them from becoming infected. In severe cases, bandage changes can take up to 3 to 4 hours.

US researchers, Krystal Biotech, however, have discovered that a newly developed gene therapy gel helps to heal the blisters – with more than two-thirds (67%) of patients who took part in clinical trials reporting that their wounds healed completely after six months.

The team at Stanford University, California, is now seeking approval for the new drug from the Food and Drug Administration (FDA) in the United States.

Around 300 people in Ireland suffer with EB, and Jimmy Fearon, CEO of EB charity DEBRA Ireland, has called on the Government to ensure that the life-changing treatment is made available to everyone who needs it.

Mr Fearon said the FDA is expected to approve the new gel – called beremagene geperpavec (B-VEC) – in May.

It is hoped the approval process for the European market, via the European Union’s European Medicines Agency (EMA), will begin shortly after.

“This is a fantastic breakthrough and fantastic news for everyone in Ireland diagnosed with the condition, and their families,” he said.

“The whole process around the changing of bandages for people with EB is massively distressing for patients and carers alike, therefore any treatment which helps to alleviate the awful pain that EB sufferers endure is more than welcome.”

Participants in the B-VEC trial are reporting that the gel is a life-changer and large wounds they have had for years have either gone, or have greatly improved.

“I only hope that when the drug receives approval for use in this country, the Government does everything in their power to make sure it is made available and accessible to everyone in Ireland who needs it,” Mr. Fearon said.

Mr Fearon, however, stressed that the new drug was one step further in helping improve the quality of life of people living with EB – and that DEBRA Ireland remained committed to funding research into helping find an eventual cure.

“We hope the public continues to show their support for our efforts by donating via our website,,” he said.

People diagnosed with EB have a genetic mutation and are unable to produce the collagen VII protein, which binds the middle and outer layer of the skin together.

The blisters and wounds are caused by the layers ‘sliding’ across each other.

Suffers are vulnerable to infections and skin cancer and often die in early adulthood.

The new gel applies a copy of the collagen VII gene to strengthen the skin and prevent blisters forming on the surface.

Results from the latest B-VEC trials were published in the latest edition of the New England Journal of Medicine.

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EB Awareness Week is an important opportunity to draw attention to the fight that people living with EB experience every single day. It’s a fight for essential treatment, care and support. A fight for the services that would change people’s lives.

This year, we built on the open letter we sent ahead of Budget 2023 and launched a campaign calling on the Minister for Health Stephen Donnelly to invest in EB care now. So far, thousands of our incredible supporters have joined people living with EB and their families in demanding funding for nursing care. Thank you so much to everyone who took action and to Liz and Rachel, two amazing mums, and to our patient ambassador Emma for sharing their powerful stories this week – together we’re fighting for a future where everyone living with EB gets the nursing care they need at home.

Having reliable and consistent nursing care is essential to protect the health and wellbeing of children and adults with more severe forms of EB. Nurses do bandage changes and manage and assess wounds – crucial treatment that helps prevent dangerous infections.

Parents shouldn’t have to provide this kind of complex care themselves due to a lack of resources. And yet a lack of proper funding and nursing shortages mean that sometimes they do. It’s a traumatic, emotionally draining experience for both parents and children.

The Government didn’t answer our call for better funding for EB care in the Budget earlier this year. Which is why it was important to stay focused on fighting for better care this EB Awareness Week.

One week won’t change the system – but every time we raise our voices, we get one step closer to making sure that everyone living with EB in Ireland gets the treatment, care and support they need. And we’re not going to give up until every family has reliable and consistent nursing care at home.

Thank you again to everyone who supported this campaign – EB Awareness Week might be almost over for another year, but together we’ll keep fighting every single day until no one living with EB has to struggle to get the care they need.

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The Budget was announced on 27th September, and we were listening closely to see if the Government answered our call to invest €941,000 in home care, outreach care and mental health supports for children and adults with EB.

While there were some short-term measures to tackle the cost of living crisis that we welcome, particularly supports for carers and people on disability payments, there was sadly no mention of funding for EB.

It’s disappointing, but it doesn’t mean our voices have been ignored. Both Sinn Féin and the Social Democrats included investment in EB in their alternative budgets, which shows the progress we’ve made in drawing political attention to the issue.

Earlier this month, we sent our open letter to the Minister for Health Stephen Donnelly, signed by over 2,800 of our wonderful supporters. A huge thank you to everyone who added their name, and to our incredible advocates Emma Fogarty and Liz Collins for leading our #InvestinEB campaign.

Together, we’ve shined a spotlight on the desperate struggle many people living with epidermolysis bullosa (EB) face to get care and support – and called loudly and clearly for investment to improve it. In the coming months, we will continue to meet with decision-makers, keep people with EB at the centre of our discussions and push for the investment we know is so badly needed.

Later this October, we’ll celebrate EB Awareness Week, where our focus will remain on our fight for better care for people living with EB across Ireland. Together, we’ll continue to push the Government to provide reliable home nursing care for families living with EB.

Thank you again to everyone who supported this campaign. It’s only by coming together that we can push EB up the financial agenda and make sure everyone living with it, day-in and day-out, gets the treatment, care and support they need.

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