EB support Meet others with EB What's on? Take a look at the exciting talks, workshops and activities you can expect in our event timetable. We hope this gives you an opportunity to learn from EB professionals and other members, and have the opportunity to spend time connecting with others in the EB community to support and inspire each other. View our full Members' Weekend timetable View our map of the venue Contents: Timetable overview Talks Workshops Indoor activities Outdoor activities DEBRA Expo Food, drink and dietary requirements Timetable overview For guests with the Extended night stay Friday 15:30 – Hotel check-in 18:30 - 21:30 – Buffet dinner in the hotel Park View restaurant Saturday 06:30 - 10:00am – Breakfast in the Parklands restaurant For all guests Saturday daytime 10:00 – Registration and refreshments 10:30 – Welcome by Tony Byrne DEBRA UK CEO 10:30 – Morning presentations, workshops and activities start (details below) 12:00 – Early lunch* and young people’s lunch table* 12:30 – Lunch sitting 1* 13:00 – Lunch sitting 2* 13:30 – Lunch sitting 3* *You will choose your lunch sitting at registration, subject to availability at each time. If you have any allergies or dietary requirements, please make yourself known to a member of Drayton Manor staff in the restaurant. 14:00 – Afternoon workshops and activities start 16:00 - 17:00 – Hotel keys available in the bandstand area for guests staying overnight. Evening dinner table plan will be displayed in the Tower Lounge. 16:30 – Teddy bears’ picnic and snacks for all 16:50 – Daytime event close and 'snack away' available Saturday evening event - Italian themed. Event wristbands must be worn. 18:45 – Pre-dinner drinks and canapes 19:15 – Take seats for evening event 19:30 – Dinner commences Evening entertainment Quiz sheets and DEBRA butterfly/beetle drive game available. Cabaret act. Disco. Silent disco option. Quiet area in the Hamilton Suite – board games and relaxed seating (children must be supervised). 23:00 – Event closes Sunday 07:30 - 10:00 – Breakfast in the hotel’s Parkland Restaurant* *Please note, no lunch or refreshments will be provided after breakfast. Various refreshments are available in the park at your own cost. 09:00 - 10:30 – Collect theme park tickets from reception and have a great time! This is for members who have prebooked tickets. 10:30 – Bedroom checkout, latest time. Please ask at the hotel reception when you check in if you require a later checkout for medical reasons. Event timings and content may be subject to change. Refer to the timetable for start times. Workshops and activities may be subject to capacity numbers and age. Presentations The Hamilton Suite People with lived experience of EB are central to helping shape the future of EB services, including research. Thank you to our members who are sharing their experiences either as part of presentations or workshops throughout the day. Morning presentations Research talks – Research introduction By Dr Sagair Hussain - Director of Research at DEBRA UK 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. Research talks – Inflammation 10:45am - 11:30am Repurposing Apremilast for generalised severe EBS - by Dr Christine Chiaverini Hear more about the progress of our first trial to begin gathering evidence that will support repurposing of a treatment currently licensed for psoriasis. Apremilast tablets improved symptoms in initial test cases and this trial will involve more people living with severe EBS. Outcomes such as blistering, pain, itch and quality of life will be measured during periods with and without treatment and compared. Positive results will support the next step of a placebo controlled clinical trial. Find out more about the project 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. Testing the use of anti-inflammatory drugs to improve junctional EB - by Dr Emma Chambers The Oliver Thomas EB Fellowship will train a new scientist specialising in EB research in the laboratory of Dr Emma Chambers. They will achieve their PhD by studying whether existing anti-inflammatory drugs can reduce EB blisters. Drugs such as Anakinra, Infliximab and Entanercept, are already in use to stop the damaging effects of immune system proteins. This work will test whether these existing drugs can reduce EB symptoms. Find out more about the project 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. Research talks – Gene therapy & mental health 11:45am - 12:30pm Permanent gene therapy for DEB - by Dr Joanna Jacków Discover how this new form of gene replacement therapy could lead to a permanent treatment that would bring life-long relief from DEB skin symptoms. This new approach must first be tested on skin cells in the laboratory to show that it is possible to replace the whole of the broken collagen gene and that this can be done with permanent effect. Find out more about the project 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. Developing a self-help toolkit for supporting wellbeing in parents of children with EB - by Prof Andrew Thompson Our 2023 Insights Study identified seven key issues of greatest importance to the EB community of which one was improving mental health provision. Find out how this project will develop a self-help toolkit to support wellbeing in parents of children with EB. It will be based on specific needs identified by EB parents and doctors through focus groups and tested by comparing outcomes for two groups of parents: those who have tried the toolkit and those who have not. Prof 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. Afternoon presentations Research talks – EB Data 2:00pm - 2:45pm DEBRA UK - NHS England Partnership: Understanding EB patient information held within the NHS - by Marta Kwiatkowska Our NHS provides appointments, treatments, surgery and prescriptions to people living with EB. Medical records of these services are kept securely in several databases. Hear from Marta about how this partnership will lead to increased knowledge about the NHS experiences of people living with EB. Her research will find and study the records so that researchers, doctors and people living with EB can know more about the facts and figures of EB. 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. Advanced and Repurposed Therapeutics for Epidermolysis Bullosa - by Dr Su Lwin Drug repurposing could lead to new EB therapies. Drug repurposing is quicker, safer and cheaper than creating a completely new treatment but still requires participation of people living with EB in clinical trials and for drugs to be licensed for use in EB in the UK. Find out more about the therapies that may benefit people living with EB and the process that future repurposed treatments for EB will go through. 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. Workshops Workshops at The Hamilton Suite Facilitated by Helen Weaver – Member Services Deputy Director The Sock exchange – back by popular demand!! 3:00pm - 3:45pm A great opportunity for people whose EB affects their feet to meet up. You can share experiences, and exchange top tips for high street products, socks, and footwear that make a difference. Come join this workshop and collect a free pair of socks (subject to availability)! 'Designing a product together that addresses painful and itchy skin’ - A presentation of discovery research and plans for product design. 4:00pm - 4:45pm Presenters from The Helix Centre If you could create something that helps people live better with their EB, what would it be? Add your voice to this design project which aims to create something for the EB community, by the EB community. Tell us what you would design to tackle painful and itchy skin. Workshops at The Victoria Room Navigating adult services 10:45am - 11:30am Dr Ogboli Malobi, Lead Consultant Dermatologist and Gemma Harrison, EB Nurse Specialist, Birmingham Women's & Children's NHS Foundation Trust For children and young people with EB aged 12 to 18. Prebook on arrival at the registration desk. Living with EB can bring lots of challenges, and during teenage years there are new experiences and your body can go through changes. Join this workshop to get helpful tips from your EB nurse and doctor to help manage these changes and get the opportunity to ask us questions about the process of transitioning to the adult service. Your rights at work and reasonable adjustments 11:45am - 12:30pm Gavin Differ, DEBRA Director of People For people living with a disability and carers. Are you aware of your rights at work? Have you had to have difficult conversations with your employer, like absence related to disability or caring responsibilities? Join this workshop to hear about HR processes, reasonable adjustments, and flexible working. You can also share your experiences and help other members. Conversation starters – for adults living with EB 2:00pm - 2:45pm EB Clinical Nurse Specialists, Solihull Hospital An informal space for members to connect with others and ask general EB related questions. Dressing difficult areas 3:00pm - 3:45pm Gemma Harrison – EB Nurse Specialist, Birmingham Women's & Children's NHS Foundation Trust This workshop is about typical areas that are difficult to dress, including elbows, knees, and the neck. Come and share your best tricks and tips and find out what the EB nurses can suggest. Mums Time to Talk 4:00pm - 4:45pm Dr Sarah Mundy, a Consultant Clinical Psychologist with EB and parent of children with EB A workshop for mums/guardians to share and discuss their feelings and experiences. Workshops at The Grill Inn ‘My strengths and resources’, a creative resiliency workshop for primary school aged children who live with EB 10:45am - 11:30am Dr Gary Burgess, Principal Clinical Psychologist, Great Ormond Street Hospital This creative workshop will support young people to identify and connect with their strengths and resources. Children will build a soft toy as they explore their personal and family strengths and resources, and support them to build a shield of resilience. Men’s Group Live - ‘Thinking Allowed’ 3:00pm - 3:45pm David Williams – Community Support Team Leader Aged 18 plus Join this friendly session to connect with other men living with EB or affected by EB. If you’re often busy looking after and thinking of others, this space is for you to be able to bounce things off men in similar circumstances. The session will be followed up with an opportunity to join a monthly men’s online group to continue the conversation. Workshops at the California Room (off of the Grill Inn) ‘My strengths and resources’, a creative resiliency workshop 3:00pm - 3:45pm Dr Gary Burgess Principal Clinical Psychologist, Great Ormond Street Hospital Children aged 3 plus who are a sibling or child of someone living with EB. This creative workshop will support young people to identify and connect with their strengths and resources. Children will build a soft toy as they explore their personal and family strengths and resources, and support them to build a shield of resilience. Last chance – soft toy adoption 4:00pm - 4:45pm Any child or young person aged 3 to 17 If you didn’t attend one of the workshops where you built a soft toy, here is your opportunity. Get to know each other better whilst making a soft toy to take to the teddy bears’ picnic. Note: This activity is not suitable for under 3’s due to the soft toy kit health and safety recommendations and is limited to one soft toy per child (subject to availability). Workshops at Tower Lounge Tai Chi taster sessions 10:45am - 11:30am 12:30pm - 1:00pm 3:00pm - 3:45pm Tai Chi is a practice that involves a series of slow, gentle movements and physical postures, a meditative state of mind, and controlled breathing. It can be performed standing or seated. Loose comfortable clothing is preferred with flat shoes and having a drink handy is a good idea. We’ve added Tai Chi to this year’s programme due to how it can help with movement, relaxation, and mental wellbeing, especially as this year’s event falls in Mental Health Awareness Week. Come along and give it a try at one of the three sessions happening during the day. Find out more Ultra Violet Puppet shows 11:45am - 12:30pm Russ has developed three ‘Black Light UV shows’ which have been performed for thousands of delighted spectators. Kids love the bright colourful characters and great music, whilst adults love the humour! Find out more Silent Disco 4:00pm - 4:45pm Would you rather end your day with dancing instead of the teddy bears’ picnic? Just collect some headphones from the registration desk and dance away at the silent disco! Indoor activities at Tower Ballroom Z Iron Man Competition EB Clinical Nurse Specialists and Specialist Paediatric Dietitian – Great Ormond Street Hospital Why don’t you pop along and have a go (or nominate a family member/carer to have a go) on our smoothie bike? Choose from four recipes that each have a focus on a particular nutrient, then peddle away to smush the nutritious ingredients together into a delicious shake. There will also be a competition to choose which recipe has the highest iron and zinc content. All correct entries will be entered into a prize draw and the winner will win a smoothie maker! Feed The Caterpillar Rosie Jones - Specialist Paediatric Dietitian, Birmingham Women's & Children's NHS Foundation Trust An interactive story to learn about good nutrition for people with EB. Red table activities Craft activities that will change throughout the day, including decorating a butterfly or caterpillar for the tree. Personalise your name badge - optional Would you like it to be easier to start a conversation with other members at the event? Are you happy to chat to other people, or answer questions about your lived experience? Personalise your badge to tell people a bit about yourself. Sticker/stamp card challenge Pick up a challenge card and visit the stands in the exhibition to fill up your card. Once your card is complete, hand it in at the Get Involved stand to be entered into a prize drawer for a chance to win an Amazon voucher! Holiday Home Interactive quiz Get ready to dive into the excitement with our Holiday Homes team! Join us for an interactive and fun-packed Holiday Homes quiz where you can have a blast and win some prizes! Whether you're a seasoned DEBRA holiday homes guest or never been before, this challenge is for you! Bring your phone and competitive spirit. Decorate a teddy bear picnic basket Get ready for the picnic by choosing your favourite colours and stickers to decorate a basket. Jigsaw challenge Take on our timed challenges... how quick are you? Accessorize your soft toy Come and accessorize your special soft toy from one of our workshops. We’ll have different accessories on offer for you to choose from, like hats, headbands, or some toy dressings if you want your soft toy to have a dressing like you. Outdoor activities Console Heaven gaming van Think you can reach the top of the podium in Mario Kart, or be a dance-off champion on the Wii? Prebook a 30-minute slot at the information desk and come along to enjoy a gaming session at the Console Heaven gaming van. Soft play area for pre-school children Crazy golf Caricaturist Magic Mirror Plate spinning challenge Entertainers, bubbles and more! VR Igloo Headset - Discover how gaming can ease EB! 10:30am - 4:00pm (drop in any time) with Dr Heidi Singleton Calling all children and young adults with EB, and parents/carers, to come and test out an innovative gaming experience, which is designed to distract from the pain of dressing changes. Teddy bears’ parade and picnic 4:30pm Bring a soft toy with you and/or join in with one of our workshops to get a new cuddly friend. There will also be a small number of teddies looking for new homes at the DEBRA pop-up shop! End of day snack 4:45pm - 5:00pm An end of day snack is available for everyone. Enjoy this in the bandstand area or take it away to the lovely garden area at the hotel. DEBRA Expo (in the Tower Ballroom) Come along and visits the stands, take part in activities, ask questions, collect a sunflower lanyard, meet other members, and chat with DEBRA staff and EB specialists. There will be places to sit and chat and a screen with livestreaming from the presentations (you can borrow headphones from the Registration desk) and workshops. Have a walk about, learn, share, and connect! There will also be a DEBRA pop-up shop, EB clinicians, healthcare company sponsors, a variety of crafts that will change throughout the day, and other fun activity/challenge tables. You can also try out the Togetherall and EB Connect platforms, learn about our exciting project with The Helix Centre, and more! Our Community Support Team will also be offering 1-to-1 appointments from 10:30am to 12:30pm on Saturday. If there’s something you’d like to talk about with one of the team, please contact [email protected] to book a 15-minute slot. Spaces may be available on the day, or will be arranged for you at an alternative later date after the weekend. Stands include… Get Involved Member Services Healthcare representatives EB clinical professionals DEBRA pop-up shop The Helix Centre And more! Food, drink and dietary requirements Park View Suite – for guests staying overnight on Friday A buffet will be available in the hotel Park View Suite from 6:30pm to 9:30pm. The menu is for adults and children – alternatives may be provided to suit dietary requirements. There is a bar where you can buy drinks, and water will be provided on the table. The Grill Inn, lunch sittings As this is a very large event, we are unable to seat everyone at the same time. You will choose your lunch sitting at the registration desk on arrival. Please arrive and eat during the time you have selected. As there are a lot of people to go through the restaurant, tables need to be freed up for the next sitting. Ice creams will be available outside after you have had your main course. 11 to 18-year-old’s lunch: 12:00pm to 12:30pm (prebooking required at the DEBRA information desk) Early lunch: 12:00pm to 12:30pm Lunch sitting 1: 12:30pm to 1:00pm Lunch sitting 2: 1:00pm to 1:30pm Lunch sitting 3: 1:30pm to 2:00pm Saturday evening We have listened to your feedback from last year’s event and are providing a set menu suitable for adults and children. If you have informed us of any dietary requirements, these will been catered for. No alternative dishes are available. Dietary requirements & allergies We have taken your dietary requirements from your application form. If these have changed, let us know as soon as possible so that the hotel can be updated. Please make yourself known to a member of Drayton Manor staff if you have any dietary requirements or allergies. Soft food Please speak to Drayton Manor restaurant staff if you need your meal to be softened. Manage Cookie Preferences