We promise to

  • keep patients at our core. Every decision we make is taken with the needs of people who live with EB at the forefront of our minds. We work with our Patient Ambassadors and our Board members to help to keep it that way.
  • always think big. Our belief in aiming high helps us to achieve big things in patient care, research and advocacy.
  • join forces with groups and individuals, in Ireland and internationally, to achieve common goals. We believe in the power of connection.
  • work hard to keep our costs low and our impact high. We strive for ever-increasing efficiency and productivity.

Mission Statement

DEBRA Ireland is dedicated to driving and supporting research into effective treatments for EB and, in the meantime, to doing everything possible to alleviate the difficulties experienced by people living with EB.

Best Practice Promise

In June 2014, DEBRA Ireland’s Board of Directors formally encapsulated this commitment in a wide-ranging initiative, Best Practice Promise (BPP), across all of the charity’s activities with the ambition of ensuring that the policies & procedures we have in place give confidence to all of our stakeholders , including donors, supporters, the general public, research partners, medical and professional services, DEBRA staff and volunteers and, in particular, those living with EB,  that the organisation is well run in terms of its activities, ethics and culture. In addition, the BPP initiative commits us to the implementation and operation of best practice on an ongoing basis, cohesively channeling our energy and drive to achievement of optimum outcomes.

Currently operation of best practice is principally comprised of:

  1. Implementation of the Governance Code principles
  2. Implementation of the Guiding Principles of Fundraising (ICTR)
  3. Compliance with the Charity’s Act 2009 and other statutory requirements
  4. Compliance with recommended financial reporting, including SORP2005 and IAS9

Ongoing development of the BPP initiative will be informed by best practice in the Irish charity sector and broader business community, as well as monitoring best practice in other jurisdictions.

We visualise a day when epidermolysis bullosa is consigned to the medical history books and are determined to do all within our power to make that a reality.