***Update on DEBRA’s Governance***
In light of the recent media stories on the charity sector I think it’s important to give you a sense of our commitment to good governance.  We want to reassure you that DEBRA is transparent, ethical and has on-going and effective audit processes in place.  We value every donation we receive and are always mindful that it is our duty to use the money to achieve the biggest possible impact for people living with EB.

Our diligence around governance makes recent news stories even more frustrating as they have the potential to negatively impact the work we do to make the lives of people living with EB easier. There is still a massive gap between the care families need and what they receive and we need your continued help to close that gap.

Here are some facts for you about our governance
–        We have a committed and strong Board, made up of at least 50% people living with EB or family members. They give their time for free and receive no payments for their work. The list of Board members can be found by clicking here.
–        Mazarsone of the leading auditors in Ireland, produce a clear, concise set of annual accounts for DEBRA every year. Accounts for the last number of years can be found below.
–        We adhere to the ICTR (Irish Charities Tax Research) Guiding Principles for Fundraising. The principles set the standard for best practice in fundraising in Ireland.
–        We are signed up to the Code of Governance for charities and are on track to be fully compliant by Dec 2016 (
–        For the accounts year ended 31 March 2016 we are adhering to the new SORP (Statement of Recommended Practice, Accounting and Reporting by Charities) accounting standards for the charity sector.

There is more detail about our governance and management below.

Please do not hesitate to give me a call if you have any queries 01-412 6924 or 086-2725581 or email me


DEBRA Ireland is a registered Irish charity, CHY8703 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. Every decision we make is taken with the needs of people who live with EB at the forefront of our minds. DEBRA Ireland follows the charity codes and practices when receiving donations and we are committed to openness, honesty and transparency with our members, donors, volunteers, patients and the general public. These principles are reflected in our Donor Charter.

DEBRA Ireland fully supports the Statement of Guiding Principles for Fundraising as set out by the ICTR and is committed to achieving the highest standards of corporate governance.       

The Statement exists to:
1. Improve fundraising practice.
2. Promote high levels of accountability and transparency by organisations fundraising from the public.
3. Provide clarity and assurances to donors and prospective donors about the organisations they support.
4. DEBRA Ireland has considered the Statement and believe we meet the standards it sets out.
5. DEBRA Ireland’s report on our fundraising activities is available in our most recent Newsletter which can be found here.

It is a priority of DEBRA Ireland to ensure that our organisation develops in a manner which fully meets the above objectives. This will be reflected by a status report, with respect to the achievement of ICTR standards, being incorporated into our annual report.

Feedback Procedure

We would love to hear from you! Contact us with your questions and suggestions either by phone, post, email to or call us directly on 01 – 412 6924. We will try to get back to you right away or at the very most, within two business days. If you prefer to contact our Chairman with a concern directly, you can email him at Our full complaint procedure document can be downloaded and read here. Our office hours are Monday to Friday 9am – 5.00pm.

Accountability and Transparency

Our Financial Reports provide the public with details of our activities throughout the preceding year. Our accounts are prepared annually by the auditors Mazars in accordance with the charity SORP standard of accountability and transparency and are available to the public for viewing.







Our CEO and Senior Management Team

Registered Offices

DEBRA Ireland, 8 Clanwilliam Terrace, Grand Canal Quay, Dublin 2