Governance and management - Debra Ireland

Governance and management

How we are governed

We keep everyone impacted by EB at the heart and core of what we do to the highest possible standards for governance, integrity, and accountability.

We are registered charity (RCN 20021726, CHY No. 8703) and a registered company (No. 141279).

Principles guiding our work

All of our work is in compliance with charities' regulation. It also promotes attitudes and a culture where everything works towards fulfilling our vision.

  • When receiving donations, we are committed to openness, honesty and transparency and these principles are reflected in our Donor Charter.
  • We are compliant with all sections of the Charities Governance Code, including the additional standards and reported as such in our most recent Charities Regulator Annual Return submission (January 2022).
  • We adhere to the Charities Regulator’s Guidelines for Charitable Organisations on Fundraising from the Public. These principles set the standard for best practice fundraising in Ireland.
  • We prepare a trustees annual report and financial statements in full compliance with the Charity SORP (Statement of Recommended Practice under FRS102) and submit full version annual accounts to the Companies Registration Office (CRO).
  • We adhere to the Charities Regulator’s Internal Financial Controls Guidelines for Charities.
  • We are a Triple Lock member of Charities Institute Ireland which actively demonstrates our openness, transparency and integrity to our beneficiaries and donors.

Our Senior Management Team

Our Board

Colm Darling (Chairman)

Colm is in his second spell as Chair of Debra having previously served from 2009 to 2015. He brings considerable director and management experience from a career in banking and financial markets working for companies in both the private and semi-state sectors.

Mark Hyland (Secretary)

Mark is the Financial Director at eXpd8, an IT company who specialise in providing IT solutions to SME professional sector. Mark and Ger are the parents of Alison and Erica, both born with EB.

Val Fynes (Family)

Val is a Bank Official with Allied Irish Banks. Val and his wife Maria are two of the founding members of DEBRA Ireland. Their son Aaron was born with EB and sadly passed away in 2001.

Liz Collins (Family)

Liz Collins is Debra's Parent Ambassador and mum to Claudia (16). Claudia was born with recessive dystrophic EB. Liz is a Quality Control Manager at BaxterStorey.

Dr Leonora Bishop

Leo acts as a strategic advisor and consultant to a number of life sciences companies. Previously, she was Head of Strategic Investments and R&D Innovation policy in IDA Ireland. She has a wealth of experience in health research and has been volunteering her time with Debra for the past number of years.

Sinéad Spain

Sinéad is a Director in Bridgespan and has over 25 years Human Resources and senior management experience gained across a number of diverse Financial Services organisations.

Bobby Healy

Bobby is the CEO and Founder of Manna (formerly of CarTrawler and Eland Technologies). He is an experienced inventor and technology entrepreneur specialising in booking engine software.

Dr Rosemarie Watson

Trained in dermatology at the Johns Hopkins Medical Institution Baltimore USA where she was subsequently promoted to Associate Professor of Dermatology. She was appointed consultant in dermatology in Ireland in 1992 to Our Lady’s Children’s Hospital Crumlin (OLCHC) and St James’s Hospital Dublin.

Fiona Duffy

Fiona is a Procurement Consultant in the Financial Services sector, and has over 25 years experience in Marketing and Procurement in the Financial Services, Pharmaceutical and FMCG sectors. Fiona’s first cousin Cora, was the oldest survivor of EB in Ireland and sadly passed away in 2010.

Dr Susanna Gaynor (Family)

Susanna qualified as a medical doctor in 1998 from Trinity College Dublin and works both as a GP and a specialty doctor in Breast Surgery. Susanna and Willie are parents to sons Jimmy, who has EB, and Mike.

Our Committees

To assist the Board in carrying out its duties and support its effectiveness, we have established three sub-committees – the Audit & Finance Committee, Development Committee, and Research Committee.

Each committee operates under a Terms of Reference, comprises both director and non-director members, and is chaired by a board director.

Audit and Finance Committee

This committee’s work covers all matters related to audit and financial reporting, risk management, legal and regulatory compliance, and governance.


  • Mark Hyland (Chair)
  • Colm Darling



Research Committee

This committee advises the board on matters relating to research and supports the organisation in its work on behalf of people living with EB in all areas relating to EB research.


  • Leonora Bishop
  • Alan Irvine
  • Michael Griffith
  • Seamus Graham


Development Committee

This committee provides objective guidance and continued feedback and engagement on the development and implementation of the fundraising strategy.


  • Fiona Duffy (Chair)
  • Robert Healy
  • Joanne Byrne
  • Tom Butler (TBC)
  • Jimmy Fearon


Key policies

Website and privacy policy

This policy explains how we process personal data – whether via personal computers, mobile devices or otherwise. Our aim is to be transparent about what we do and to make it easy for you to control the use of your data based on your preferences.

Feedback procedure

As a learning organisation, we recognise and value the importance of feedback on our work.

Contact us with your questions and suggestions either by post or email to or call us directly on 01 4126924.

We will try to get back to you right away or at the very most, within two working days. Contact us via email.

Our complaints policy

We actively listen and respond to feedback so that we can continue to improve. We welcome both positive and negative feedback.

Cookies policy

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