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Interim Appointments to Our Trustee Board

Following the sad passing of Mike Jaega, our Chair of Trustees, in February, the Board of Trustees has decided to instigate a search for a new Chair and has made some interim appointments that will ensure our governance remains sound until the search is complete.

Jim Irvine has been appointed as Interim Chair of Trustees and Jo Merchant as Acting Treasurer.


Jim has been involved with DEBRA in various capacities for over 20 years and has a wealth of business and finance experience. He has been a trustee since 2012 and has served as Treasurer and Chair of the Finance, Risk & Audit Committee since 2014.

In addition to bringing her personal experience of EB Simplex to the Board, Jo is a Chartered Accountant and is Vice Treasurer of the Finance, Risk & Audit Committee. 

We are resolute in our aim to find effective treatments and a cure for EB and provide care and support to people with EB here and now. 

We are the leading EB support group in over 45 countries, with a strong partnership with the NHS and we invest about £1m a year in global research.

We’re advanced in our planning to hold the inaugural EB World Congress in London in January 2020, an event that will bring together experts from around the globe to share their knowledge on EB and strengthen existing and forge new alliances across their network.

Coupled with our successful network of charity shops, DEBRA has grown into a large charity with almost 400 employees and around 800 volunteers working hard to fight EB. We’re proud to have the Countess of Wessex as our Royal Patron and Simon Weston CBE as our President.

We’re very grateful to Jim and Jo for stepping up to take on these additional responsibilities as we seek a permanent Chair of Trustees.


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