EB support Meet others with EB Members' Weekend 2024 Last updated on February 13. Our research speakers have been announced! You are invited to DEBRA UK Members' Weekend taking place on Saturday 18 and Sunday 19 May 2024 at Drayton Manor Resort (hotel, theme park and zoo). Book your place here Members' Weekend is a great opportunity to connect, share and inspire each other. You’ll be able to meet other members of the EB community, living and working with all types of EB and of all ages. There will be talks, discussions, practical workshops and information zones, plenty of food and refreshments, and a wide range of activities and fun for all ages. You are still welcome to apply for the whole weekend, but please be aware that if you would also like to book for the evening/overnight option you will be added to the waiting list. We will then be in touch to let you know which part(s) of your application has been successful. You can always get in contact with us if you have any questions. Keep an eye on this webpage, our social media, and members emails for new updates. If you're unable to attend in person but would like to follow along by watching the event's presentations, please let us know if you'd be interested in following a livestream. I had great fun whilst learning new stuff and feeling like I was a valuable part of the weekend and DEBRA in general. It was great to have a stress-free break where it was catered to people with EB so I didn’t have to ask for any adjustments such as additional seating. Everything was very relaxed, well organised and great fun. Our CEO, Tony Byrne, talking at our 2023 Members' Weekend, summed up the event as "a great day for us to be together, having great experiences and learning from one another.” Contents What's on? Who can attend? How to book Terms and conditions Get in touch What's on Saturday daytime FREE for all DEBRA UK Members. Join talks, discussions and workshops. Explore information zones. Hear the latest EB news and updates. Meet members, DEBRA staff and EB practitioners. Enjoy a wide range of activities and fun for all ages. And plenty of food and refreshments! Want to follow along if you can't make it in person? We are also looking into the best ways to share the event’s presentations with those who are not able to attend. We’d like to know if any of you who are not able to be there in person would be interested in following a livestream of the presentations. I'd be interested in following a Members' Weekend livestream Please let us know by clicking on the button above and completing a short form. Saturday evening The optional Saturday evening event is £40.00 per adult (18+); free for children and young people. Evening drinks reception, dinner and disco. Overnight accommodation and breakfast. Sunday activity The optional Sunday activity is £10.00 per adult (18+); free for children and young people. Entry to the resort’s theme park and zoo. If you don’t already have an easy access pass, passes can be applied for through Nimbus Disability. You can apply in advance here. Access passes are also able to be used in other attractions such as the theme park. Our research speakers Dr Sagair Hussain Dr Sagair Hussain is the Director of Research at DEBRA UK and secretary and treasurer of the Dermatology Council of England. Before joining DEBRA UK, Dr Hussain worked at the British Association of Dermatologists (BAD), where he delivered their most successful research initiative, the psoriasis patient registry (BADBIR). Having successfully raised the profile of psoriasis amongst scientists and clinical researchers, he now works at DEBRA UK to do the same for EB. Dr Su Mar Lwin Dr Su Mar Lwin is a dermatologist at St John’s Institute of Dermatology, Guy’s and St Thomas’ NHS Foundation Trust and Honorary Lecturer at King’s College London. Dr Lwin has worked for over a decade in translational research in skin diseases caused by single gene changes, and was Principal Investigator on our pre-clinical study to develop a novel spray-on ex vivo gene therapy for RDEB. Dr Christine Chiaverini Dr Christine Chiaverini is a dermatologist at the Centre Hospitalier Universitaire de Nice in France. She has a PhD in biology and has worked at the EB reference centre in Nice, France, since 2008. She is the head of a small but very motivated and dynamic team, with a clinical part that takes care of patients and a biological part that takes care of EB diagnosis and research. Dr Emma Chambers Dr Emma Chambers is a Lecturer in Immunology based in the Blizard Institute at Queen Mary’s University London (UK). Dr Chambers received her PhD from Kings’ College London then continued her research as a postdoctoral fellow in the lab of Professor Arne Akbar at University College London. In April 2020, she was awarded a Bart's Charity Lectureship to start her own lab – the focus of her lab is on the detrimental role of chronic inflammation on immunity across the life-course, with a central theme of cutaneous immunity. Dr Joanna Jacków Dr Joanna Jacków is a research group leader at King’s College, London (UK). She has extensive experience and a proven track record in epidermolysis bullosa gene therapy and gene editing applications. Dr Jacków has demonstrated efficient gene editing using a variety of gene editing tools, including CRISPR-Cas9, to precisely repair the genetic changes that cause DEB in skin cells and stem cells. Professor Andrew Thompson Professor Andrew Thompson is a Consultant Clinical Psychologist and is currently the NHS Programme Director for the South Wales Clinical Psychology training programme based at Cardiff University. Andrew has a background in supporting people living with long-term conditions and much of his research has focused on psychological aspects of skin conditions. He has also previously provided psychology services to NHS dermatology patients. He is a long-standing Associate Editor for the British Journal of Skin Conditions, and has been an advisor for the All Party Parliamentary Group on Skin Diseases (APPGS). He is currently working with DEBRA UK on a study funded by the charity to develop a 'toolkit' to support parents. Marta Kwiatkowska Ms Marta Kwiatkowska is a senior data analyst working jointly with NHS England and DEBRA UK to understand more about how people living with EB access NHS services. She received her MSc from Imperial College London in Health Data Analytics. She has previously worked in Public Health England analysing skin cancer data, for the British Association of Dermatologists (BAD) and in the pharmaceutical industry. Who can attend? You must be a DEBRA UK member to attend the event. You can learn more about how to become a member for free here. Please note: All members are welcome to attend the daytime Members’ Day event on Saturday (subject to venue capacity). However, a maximum number applies for the Saturday evening event, which includes dinner and overnight accommodation. Your party needs to include someone living with EB. How to book After reading the event terms and conditions, use the link below to complete your application form online. Please contact us if you need assistance or have any questions. Event application form A £40.00 contribution (no charge for children under 18) will be required to secure your booking for the evening meal and overnight accommodation (subject to eligibility criteria). Once we have confirmed bookings, we will advise how payment should be made. You do not need to do anything until you hear from us. It can take over a month for us to review and process applications, so please bear with us at this busy time. Terms and conditions Please click on the button below to download the terms and conditions. Event terms and conditions Get in touch If you have any suggestions for Members’ Weekend 2024 or any questions, please contact the Membership Team at [email protected] or by phone on 01344 771961 (option 1). Manage Cookie Preferences