Summer 2015 The magazine for everyone living with EB The excitement of Members’ Weekend See page 6 Plus • A day in the life of an EB Clinical Nurse Specialist • Research: Q and A with Prof. Hovnanian and more… Book your holiday now Prescriptions ordered on the go – see page 10 – see page 12 www.debra.org.uk This edition sponsored by Clinidirect. Welcome Welcome to the summer edition of In Touch I’d like to begin by thanking everyone DEBRA is committed to offering who came to DEBRA’s Members’ the best possible care and support Weekend and AGM this year – over to people living and working with 300 people attended, including over EB. Please continue to share your 100 people with EB, and their families, views and stories with us. We will making it the largest event for DEBRA soon be launching a new fundraising members to date. e-newsletter which you may receive if you’ve opted in to fundraising mail – Special thanks go to the EB clinicians, you will be able to unsubscribe should nurses and healthcare professionals you no longer wish to receive it. who gave up their time to attend, hold exhibition stands and lead or If you have any ideas for activities participate in Q and A sessions. For for future Members’ Days or a flavour of the excitement of the potential venues please email weekend please turn to pages 6 – 9.
[email protected] call the Membership Team on 01344 DEBRA UK is also proud to be 771961or contact me directly. hosting EB-CLINET and the DEBRA International conferences for clinicians In this issue and professionals in London this Best wishes, year (24 – 26 September), providing Members’ Weekend 6 unparalleled opportunities for leading clinicians and DEBRA organisations Getting together Claire Mather from around the world to share in Birmingham 3 knowledge.