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 * About EB
   * What is EB?
   * Types of EB
     * EB simplex
     * Junctional EB
     * Dystrophic EB
     * Kindler EB
   * Information and resources on EB
 * EB support
   * How can we help you?
     * Financial support
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   * Register with us
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 * EB research
   * What we do in EB research
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     * Apply for funding for your research
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Previous


BONNIE'S UNCLE, WHO HAS A FEAR OF HEIGHTS, WILL LEAP FROM A PLANE TO RAISE
AWARENESS ABOUT EB

“She often says she wants to be someone else, and this really hurt me to hear as
a mam of a child so young, but we reassure Bonnie she is the most special child
and without her, we would fall apart,” said mum Amy Basteed.

Read more



"AGAINST ALL THE ODDS, I'M ABOUT TO CELEBRATE MY 40TH BIRTHDAY. YOU CAN MAKE MY
BIRTHDAY WISH COME TRUE."

No one expected Emma to survive for this long – because people with my type of
EB almost never do – but she has always been encouraged to be a fighter. Now she
is asking people to donate to Debra, so everyone with EB in Ireland can live the
longest, fullest life possible."With your support, I know a better future for
people with EB is right there, in touching distance."

Donate today to help people like Emma



BONNIE'S UNCLE, WHO HAS A FEAR OF HEIGHTS, WILL LEAP FROM A PLANE TO RAISE
AWARENESS ABOUT EB

“She often says she wants to be someone else, and this really hurt me to hear as
a mam of a child so young, but we reassure Bonnie she is the most special child
and without her, we would fall apart,” said mum Amy Basteed.

Read more



"AGAINST ALL THE ODDS, I'M ABOUT TO CELEBRATE MY 40TH BIRTHDAY. YOU CAN MAKE MY
BIRTHDAY WISH COME TRUE."

No one expected Emma to survive for this long – because people with my type of
EB almost never do – but she has always been encouraged to be a fighter. Now she
is asking people to donate to Debra, so everyone with EB in Ireland can live the
longest, fullest life possible."With your support, I know a better future for
people with EB is right there, in touching distance."

Donate today to help people like Emma



BONNIE'S UNCLE, WHO HAS A FEAR OF HEIGHTS, WILL LEAP FROM A PLANE TO RAISE
AWARENESS ABOUT EB

“She often says she wants to be someone else, and this really hurt me to hear as
a mam of a child so young, but we reassure Bonnie she is the most special child
and without her, we would fall apart,” said mum Amy Basteed.

Read more

Next
 * 1
 * 2


WHAT IS EB?


WHAT IS EPIDERMOLYSIS BULLOSA (EB) OR "BUTTERFLY SKIN"?

EB is an incurable genetic condition that affects the body's largest organ; the
skin.

People living with EB are missing the essential proteins that bind the skin's
layers
together, so any minor friction, movement or trauma causes it to break, tear,
and blister.

It is as fragile as a butterfly wing.

That's why we're here. To be a positive force for all those living with EB
and all whose lives have been impacted by EB.


THERE ARE 4 TYPES OF EB


EB SIMPLEX


JUNCTIONAL EB


DYSTROPHIC EB


KINDLER EB


IF YOU HAVE JUST RECEIVED A NEW EB DIAGNOSIS OR ARE LOOKING FOR SUPPORT, WE ARE
HERE FOR YOU

If you have recently discovered that your child has a suspected case of EB, we
want you to know that we are here to offer support. Receiving a new diagnosis
can be overwhelming, and it is important to take things one day at a time.

Our experienced team has helped numerous families adjust to an EB diagnosis, and
we are here to assist you as well. To access support, simply register with us.
We will arrange a call or a visit according to your needs.



Register with us



HOW CAN WE HELP YOU?

I am looking for...Information on visits and support callsFinancial
supportBereavement supportPeer support and eventsInformation and
resourcesRegister with DebraGet in touchApply for funding for your
researchInformation and support for healthcare professionalsI am looking for...


WE ARE DEBRA

We are here to tell everyone about EB, to compel everyone to care, and to be a
positive force for all those living with EB, caring for someone with EB, or who
have been bereaved by EB. We are here to help in all kinds of everyday ways, to
listen, support, empower and alleviate unimaginable pressures. We are here to
lobby those in the halls of power. To command attention, demand and drive
research and ensure imperative progress is made. But above all, we are here to
bring hope – and not that passive, powerless, resigned kind of hope – but the
active, bold hope that moves things on.



Access our services and support
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NEWS AND EB STORIES

News 10 June 2024

Bonnie’s uncle, who has a fear of heights, will leap from a plane to raise
awareness about EB

Read more
News 28 May 2024

‘My Butterfly Skin rips with the softest touch’, Claudia Scanlon shared with
Truly

Read more
News 21 May 2024

Putting EB foot problems in focus

Read more
More news


EB RESEARCH

We are the largest funder in Ireland of EB research. We drive research into
effective treatments and cures for all types EB. Rare diseases, such as EB,
often get overlooked when it comes to the development of new treatments. And
because of the various forms of EB and its complexity, treatments and a cure are
not universal. A cure is likely to look like a combination of treatments.

 


WHAT WE DO?



We support the scientists that undertake EB research

We fund EB research and identify new research funding opportunities

We advocate and lobby for improved research funding and opportunities in Ireland

We ensure that those who link with us have their voice heard in all projects


MAKE A DONATION

Your donation funds respite, counselling sessions for adults with EB, play
therapy for children, home visits, home adaptations and specialised EB training
for nurses and medical staff, research projects, amongst other things.


Donate once Donate monthly


OUR IMPACT


500

support calls a year


€416,000

committed towards Irish projects valued at over €600,000


15

research projects currently ongoing In areas such as wound healing, quality of
life, gene therapy and pain management


OVER 50

visits in one year

 * Debra
   Butterfly Cottage
   8 Clanwilliam Terrace
   Grand Canal Quay
   Dublin 2
   D02 R240

 * +353-1-412-6924
 * info@debra.ie

 * What is EB?
 * EB support
 * EB research
 * Get involved
 * Our campaigns
 * Who we are

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 * Share your story
 * Your consent

Connect with us



 * Website and privacy policy
 * Cookies policy

 * Registered charity number: 20021726 - Charity tax exemption number: 8703 -
   Company registration number: 141729
 * Copyright © 2024 | Debra



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