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The Butterfly Skin Charity

Debra Ireland - The Butterfly Skin Charity

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MENUMENU
  • What is EB?
  • Home
  • About Us
    • About DEBRA Ireland
    • Governance and Management
    • Our impact reports and financial accounts
    • Our Promise
    • What is EB?
    • Our Ambassadors
    • Celebrity Champions
    • DEBRA International
  • What We Do
    • Family Support
      • Young people with EB
      • EB Cards
      • Real Life Stories
      • The Butterfly Garden
      • Meet the Team
      • Family Support Services
      • Health Entitlements
      • The Hospital Referral Process
    • Research
      • EB Research in the News
      • DEBRA Ireland’s Involvement in Research
      • Patient and Public Involvement
      • EB Patient Registries
      • Clinical Research
      • DEBRA Ireland Research Committee
    • Awareness & Advocacy
      • Working together for rare diseases
      • Improving health entitlements
      • Improving care
      • Progressing the development of therapies
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      • Gifts in Wills
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      • Facebook fundraising
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Research

Research
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 16 January 2023
Research
DEBRA Care Conference 2022 14 September 2022
Research
How Clinical Trials Work – an EB Expert Perspective 24 August 2022
Research
The Importance of Public and Patient Involvement (PPI) in Research 15 August 2022
Research
European Conference on Rare Diseases and Orphan Products (ECRD) 2022 13 July 2022
Research
University of Limerick PPI Summer School 11 July 2022
Research
The First World Congress on Rare Skin Diseases – Paris 15 June 2022
Research
Promising results from two new EB treatments in development 2 June 2022
Research
A spray to treat oral scarring in EB 23 May 2022
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DEBRA Ireland,
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8 Clanwilliam Terrace
Grand Canal Quay
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Registered charity number: 8703
Charity regulator number: 20021726

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