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News and Stories: Patient Support

Alison’s Story

Written by Cheryl Gunning on April 13th 2022

 

Some pain isn’t easy to see. Alison Hyland will be the first to tell you that her EB isn’t as severe as what other people live with.

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Tags: Fundraising and Events, Patient Support, Patients' Stories, Research
Categories: Appeals, News

Message from EB community outreach nurse Suzi O’Neill

Written by Cheryl Gunning on July 1st 2020

Our EB community outreach nurse, Suzi O’Neill, is an extension of the current EB nursing team and is the link between the hospital and our families; allowing patients to get medical support and advice in the home.

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Tags: Patient Support
Categories: Family Support, Meet the Team, News

Update from our Family Support Team

Written by Deirdre Callis on June 12th 2020

Hi Everyone,

Deirdre and Eve here giving you an update on how we are all doing and checking in with you to see how you are all doing?

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Tags: Patient Support
Categories: Family Support, News

COVID-19 Information Booklet

Written by Cheryl Gunning on April 6th 2020

The current COVID-19 pandemic has led to uncertainty and questions for all of us. Our colleagues in DEBRA International have produced an information booklet on COVID-19 for the EB Community.

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Tags: Advocacy, Patient Support
Categories: Advocacy, Family Support, News

Covid-19 Statement

Written by Deirdre Callis on March 11th 2020

Coronavirus is a respiratory disease which seems to start with a fever, followed by a dry cough. After a week, it leads to shortness of breath and some patients require hospital treatment.

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Tags: Patient Support
Categories: Family Support, News

International Women’s Day

Written by Cheryl Gunning on March 3rd 2020

We want to take time out to celebrate all the incredible women involved in fighting for those living with EB.


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Tags: epidermolysis bullosa, International Womens Day, Patient Support, Patients' Stories, Rare disease, Research, skin
Categories: Advocacy, Family Support, News, Research

DEBRA Family Christmas Party

Written by Cheryl Gunning on January 21st 2020

We held our family Christmas party in December in the Clayton Hotel, Cardiff Lane, who once again pulled out all the stops to help create a really lovely day for our families.

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Tags: Patient Support
Categories: Family Support, News

Family Day in Barretstown

Written by Cheryl Gunning on July 3rd 2019

Last year we held our second family weekend in Barretstown, Co Kildare. Families from all over Ireland and the UK living with EB came together for a fun-filled weekend where they spent time with other families living with the condition.

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Tags: Patient Support, Patients' Stories
Categories: Family Support, News

Recent Posts

  • We launched our EB Expert Panel to help shape our support and research priorities
  • Claudia Scanlon and Johnny Sexton join Ryan Tubridy on emotional Late Late Show interview
  • Newsletter Spring Edition
  • People living with EB need mental health support
  • The Government has been urged to ensure that a breakthrough treatment for people living with the extremely painful skin disease, Epidermolysis bullosa (EB), is supplied to everyone who needs it, once it becomes available in Ireland

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DEBRA Ireland,
Butterfly Cottage
8 Clanwilliam Terrace
Grand Canal Quay
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Tel: +353-1-412-6924
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Registered charity number: 8703
Charity regulator number: 20021726

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