DEBRA was founded in 1978 by Phyllis Hilton whose daughter Debra had Dystrophic Epidermolysis Bullosa (EB). The charity was the world’s first EB patient support group. When Phyllis' daughter Debra was born in 1963, little was known about EB; Phyllis was told that there was nothing that could be done for Debra and to take her home and look after her until she died. Phyllis ignored this advice and instead looked for ways to treat Debra's skin using cotton dressings. When she founded the charity, EB was heavily under-researched and very little was known about the disease, including treatment and pain management. DEBRA has since grown into a charity of international scope with sister organisations in 40 countries, a worldwide research programme, and strong clinical and nursing services. In 2019 Debra’s income was £16m and the charity now employs 365 across the UK, together with over 900 volunteers, mostly in c. 100 Debra charity shops.

EB is a group of genetic skin conditions which cause the skin to blister and tear at the slightest touch. The effects of this condition can range from discomforting, where only the hands and feet are affected, to devastating. The most severe types of EB can cause lifelong disability, permanent and continuing pain and can be fatal. DEBRA is committed to funding innovative research to improve quality of life and symptom relief for sufferers of EB, with our overall mission dedicated to finding effective treatments that will end the pain and life limiting effects of EB forever.

While the ultimate aims and objectives of the charity are to create a world free from the effects of EB, healthcare and palliative care are key priorities day to day using dedicated health and social care teams. DEBRA works collaboratively with other organisations to enhance the care available to EB sufferers, such as working in a partnership with the NHS to enhance the healthcare system and clinical experience for the EB community. Aside from donations through Gift Aid, DEBRA does not receive government support. Prior to COVID-19, DEBRA was generating a revenue of over £16m, relying largely on retail, with over 110 shops located throughout the UK, as well as funding received from donations and fundraising events. Thankfully, due to its strong history and reliable reserves, DEBRA was only slightly weakened by the pandemic, but is still in a very strong position.

DEBRA is currently seeking a new Vice-Chair for its Finance, Risk and Audit Committee with a background in finance, audit or risk. As a part of succession planning, the Vice-Chair will eventually be expected to take on the role of committee Chair in 2024. In this role, the successful candidate will support the Director of Finance, the Chief Executive Officer and other Board members to ensure that the organisation’s finances are effectively managed. They will advise on compliance and support the Board with the charity’s mission to fund EB research and support healthcare services. The successful candidate will also work closely with the Chair of the Finance, Risk and Audit Committee to ensure best financial practice for the charity.

The responsibilities of this Committee are to oversee, encourage and monitor the effectiveness of the financial and other internal controls of the charity, on behalf of the Board. It reviews the audited annual report and financial statements and the letters of representation for approval by the Trustees. It also gives assurance to the Board that the charity's financial operations are being managed and operated in accordance with the charity's governing documents, and in compliance with relevant legislation and standards, and its regulator, the Charity Commission for England and Wales.

There are current vacancies on the Board of Trustees, and therefore the successful candidate may want to apply to join in due course.

The successful candidate will be a qualified accountant, who will be able to advise and support the Board on financial matters. Ideally, they will have an understanding of charity accounts.

A key part of DEBRA's revenue generation, prior to the pandemic, was through the sales made in its 110 shops located throughout the UK. DEBRA is therefore interested in hearing from candidates who have a background in retail finance.

Whilst not essential, DEBRA is also interested in hearing from candidates with audit and risk expertise, and can demonstrate an understanding of the procedures needed to review annual audit reports. This experience will have been gained in finance and audit at a senior level.

DEBRA welcomes applications from candidates who are looking to take on their first non-executive role.

The time commitment for this role includes four Finance, Risk and Audit Committee meetings, with ad hoc engagement expected when required. Committee meetings are currently held online, and so DEBRA is open to hiring the successful candidate from anywhere within the UK. The role is unremunerated and consists of a three-year term length which can be extended by a further two terms of three years. Reasonable pre-agreed expenses will be reimbursed where necessary.