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.
Contents
Friday
15:30 – Hotel check-in (please ask if you require a later checkout for medical reasons).
18:30 – 20:30 – Buffet dinner in the hotel Park View restaurant (through the hotel bar)
Saturday
06:30 – 10:00am – Breakfast in the Parklands restaurant
Saturday daytime
10:00 – Event opens with ribbon cutting
10:05 – Registration and refreshments
10:45 – Morning workshops and activities start (full details below)
12:00 – 14:00 – Lunch will be served in the hotels Parkland restaurant and garden room.
Takeaway boxes will be available so that a member of your party can collect lunch and bring it back for you if needed.
If you are attending on your own and require assistance, please contact membership@debra.org.uk by Monday 11 May.
12:00 – Lunch sitting 1*
12:30 – Lunch sitting 2*
13:15 – 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.
12:15 – 2:00 – Ice Cream Van
Come and enjoy a sweet treat on us! An ice cream van will be at the event, and every member will receive a token to redeem for a free ice cream. Don’t miss out!
14:00 – Afternoon workshops and activities start
16:30 – Snack table opens at the hotel restaurant and collect a butterfly
16:30 – Hotel keys will be available with the end of day snack, in the hotel restaurant. Please ask at the hotel reception if you require a later checkout for medical reasons.
16:40 – Butterfly Launch in the hotel garden
16:45 – Daytime event close
Saturday evening event
18:45 – Pre-dinner drinks and canapes
19:15 – Take seats for evening event
19:30 – Dinner commences
- Live performers
- Disco
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, unless a later time has been arranged when you checked in.
*Event timings and content may be subject to change. Please refer to the timetable for start times.
*Workshops and activities may be subject to capacity numbers and age.
With Dr Sagair Hussain, DEBRA Director of Research and Dr Abi Witherden
Join Dr Sagair Hussain (DEBRA Director of Research) and Dr Abi Witherden for an informal chat about the research projects we’re funding. Find out how our new factsheet series aims to help understand the promising research we fund and ask any questions you have about why skin itches, blisters and hurts and the different types of EB. Ask us anything – tell us anything!
Pick up a copy of each factsheet or check them out on your phone.
- The science behind EB skin
- The science behind EB pain and itch
- The science behind diagnosing types of EB
With EB Community Support Managers Rowena and Amelia.
Explore and share the products, adaptations, and everyday solutions that can make living with EB a little easier. This friendly workshop helps you learn what others have tried, discover new ideas, and support one another when navigating choices that can feel daunting. Your insights will also contribute to an information‑gathering project for the Helix‑identified priority: creating a dedicated Product Directory for the EB community.
With Kati Paalosalo-Harris – Advanced Nurse Practitioner in EB – Guy’s and St Thomas’ Hospital.
Understanding your genetic makeup can be life‑changing — not just for you, but for your whole family. This workshop will explore why obtaining a clear genetic diagnosis is so important, and how it can empower you to make informed decisions about your health and future.
- Why having a personal genetic report is important
- What is involved in adult genetic testing
- What might the results be
- What does a genetic test report look like
- Different inheritance patterns and what they mean
- Reproductive options/family planning
With Rosie Jones, Natalie Yerlett and Marie Fitzpatrick, EB Dieticians from Great Ormond Street Hospital, Guys and St Thomas’s hospital
Jelly doesn’t just have to be a treat — with a few clever tweaks, it can become a nutrient‑boosting option that supports gut health, hydration, and healing. Adding fibre and vitamin C is especially helpful for people with EB.
With Dr Sagair Hussain and Dr Abi Witherden
Join Dr Sagair Hussain (Director of Research) and Dr Abi Witherden for an informal chat about the clinical trials we’re funding. Find out how our new factsheet series aims to help understand the process of getting new EB treatments to the people who need them. Ask your questions about how new treatments are developed and tested and made available through the NHS. Ask us anything – tell us anything!
Victoria Room (accessed via The Hamilton Suite)
We’re nearly there! With funding from DEBRA, Professor Thompson and his team have been working on a brand‑new self‑help wellbeing toolkit designed specifically to support parents of children living with EB. Members have helped shape this resource from the very beginning.
Join us to hear directly from the team as we share an update on the project so far, and introduce some of the practical techniques included in the toolkit. We’ll
also be asking for a small number of volunteers to add there voice to the materials or/and to help us collect new photographs for use in the final toolkit. This is a chance to further shape this project, support one another, and get a taster of some of the techniques involved.
Hosted by Professor Andrew Thompson, consultant clinical psychologist with expertise in wellbeing of people living with skin conditions, and Dr Olivia Hughes, an academic psychologist with experience of conducting research with families of children with EB.
This session offers an interactive space for parents/carers, with space to explore personal and emotional experiences in a supportive, informal setting. Drawing on Sarah’s experience as a Consultant Clinical Psychologist, DDP Practitioner, author, and her own lived experience of EB, there will be some research shared, alongside time to explore together, normalise common experiences, and learn from one another about helpful coping strategies, self-compassion and connection. Whilst not specifically focused on parenting, we can also think about the impact of parenting a child with EB and ways to feel more confident and connected with your children.
Hosted by Dr Sarah Mundy – Consultant Clinical Psychologist.
Join us for a powerful, cross‑generational conversation within the EB community. This session is all about sharing lived experience — how others have navigated the challenges you may be facing today. Hear practical tips, clever ideas, and honest reflections from members who’ve lived with EB for many years. Whether you’re seeking reassurance, new strategies, or simply the comfort of knowing you’re not alone, this is a chance to learn from one another and build confidence together. Member led.
Hosted by – Tony Kay, Kevin Kealy and Ayssa Shabir, DEBRA members.
This workshop will provide an introduction to psychology and explore what it is and how it can offer support. If participants are interested, there will be an opportunity to take part in a couple of gentle relaxation exercises. The session may include discussion of different psychological approaches, including self‑compassion, and how these can be helpful for people living with different forms of epidermolysis bullosa (EB).
Hosted by Dr Jodie Fellows – Consultant Clinical Psychologist Dermatology Solihull Hospital.
People living with Epidermolysis Bullosa are often told, directly or indirectly, that work might not be possible. This workshop challenges that idea.
Whether you’re exploring your first job, considering a career change, or unsure what’s realistic for your body, this session will share real experiences, practical ideas, and honest conversations about employment with EB.
We’ll explore:
- Different types of jobs people with EB are doing
- How work can be adapted to suit your needs
- Common concerns and how others manage them
- Real-life experiences from peers living with EB
This is a safe, supportive space to ask questions, share experiences, and connect with others who understand.
You don’t need to have it all figured out, just come along and see what might be possible for you.
Hosted by Community Support Area Managers Gemma and Jade, DEBRA members Daval Amratlal and Qassim Saeed, Dr Jodie Fellows – Consultant Clinical Psychologist Dermatology Solihull Hospital, and Gavin Differ, DEBRA Director of People.
The DEBRA Content Zone – in the bandstand (gazebo)
This session is all about learning the practical building blocks behind great social media content. You’ll explore how to film on your phone, feel more comfortable talking to camera, understand what makes short‑form videos work, and learn simple editing techniques – including how to add clear, accessible subtitles.
We’ll break things down step by step, with plenty of hands‑on practice and fun activities, space to ask questions about safety and accessibility, and a mini skills challenge to try everything out.
A relaxed, confidence‑boosting workshop designed to help you build useful digital skills you can take anywhere – with no pressure, and no posting required!
This session is all about learning the practical building blocks behind great social media content. You’ll explore how to film on your phone, feel more comfortable talking to camera, understand what makes short‑form videos work, and learn simple editing techniques – including how to add clear, accessible subtitles.
We’ll break things down step by step, with plenty of hands‑on practice and fun activities, space to ask questions about safety and accessibility, and a mini skills challenge to try everything out.
A relaxed, confidence‑boosting workshop designed to help you build useful digital skills you can take anywhere – with no pressure, and no posting required!
Please note – any under children under 16 will need to be accompanied by an adult to be involved.
The Boardroom (over in the hotel, 1st floor)
Join us for a relaxed and friendly session for men living with or affected by EB.
This is a chance to meet others who understand your experiences, chat about what supports your wellbeing, and share what matters most to you. Together, we’ll explore how an online Men’s Group could look and feel in the future. Your voice will shape what comes next.
Hosted by Erin Reilly, EB community Support Manager and Gavin Differ, DEBRA Director of People
Drop in to this informal table talk to chat with Tony and our trustees about anything to do with DEBRA. This is your chance to dive into the topics you care about most.
Bring your big ideas, bold questions, curious thoughts, and anything you’ve ever wanted to know about DEBRA.
Hosted by Tony Byrne, and DEBRA Trustees
After their workshop “If I Knew Then What I Know Now”, DEBRA members Tony, Kevin and Assya be here to continue the conversation — and they’d love you to join them.
This informal drop-in is your chance to share the practical tips, insights and hard‑won knowledge that have made the biggest difference in your life with EB. What do you wish more people had known sooner? What support really helped — or could have helped —at the right moment?
Come and help shape how DEBRA can spread this lived experience more widely across the membership. Whether it’s buddying schemes, mentoring, peer‑to‑peer groups, or something completely new, your ideas can help ensure not everyone has to learn everything the hard way.
Pop along, pull up a chair, and be part of building support for other members.
Come along and visits the stands, take part in activities, ask questions, collect a sunflower lanyard, meet other members, and chat with DEBRA staff, EB specialists and healthcare company sponsors. Have a walk about, learn, share, and connect!
Member Connections
First time at Members’ Weekend? Or just keen to meet more of your fellow DEBRA members? When you arrive, look out for our friendly ‘Welcome Guides’ in the Tower Ballroom who have different activities to help you connect with other DEBRA members at the event.
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.
Exhibition stands include…
- Member Services – Pop along and check you are making the most of your membership. Including holiday homes, connecting with your community support manager, free ticket to events, EB books and cards and so much more.
- Sunflower Corner/Get Involved – Come and grab your free sunflower growing kit, seeds, or a little seedling, ready to plant. Take part in our sunflower prize draw and play with family and friends to guess how tall yours will grow and raise money for DEBRA. You can also discover all the ways you can support DEBRA.
- Feed Your Healing: “Nutrition for Wound Repair” – EB Dieticians will be discussing nutrients important for would healing, and ways to incorporate in your diet.
- Managing EB: Dental Tips for Everyday Confidence – Guy’s and St Thomas’ Hospital dental team
- Living with EB: Share what helps you – Join us at our EB solutions stand, where we’re collecting information of real products and services that make life with EB a little easier. To get things started, we’ll have a selection of example products already on display. We need your help to build our EB product directory.
- Working with EB – Visit our stand to tell us what helps you thrive at work, learn from others navigating EB in their careers, and explore the adjustments and support you may be entitled to.
- Genetic Testing – Visit our stand to learn what a genetic diagnosis means, ask questions, and discover your next steps. To help us better understand and support the EB community, we’re collecting information at the event about who has, has not, or is unsure about having had genetic testing for EB.
- Solihull and Birmingham Women’s and Children’s Hospital EB nursing teams – Pop along and meet members of the EB nursing teams and get answers to your questions. Whether you want to learn more about accessing the service, understand the support available, or simply get practical advice, the team is here to help.
- Healthcare company representatives.
Calling all creators! Drop into our Content Zone to film mini-interviews, try fun content prompts, or join one of our social media workshops. Whether you are camera‑confident or simply curious, we’ll guide you through simple ways to get involved and make your voice heard. It’s a great chance to help raise EB awareness, share your experiences, and create something meaningful with the DEBRA community.
Discover our retail pop‑up shop, packed with feel‑good finds and perfect gifts. Browse a selection of new goods, including cosy bamboo socks, alongside thoughtful gifts, cards and gift wrap.
Feeling lucky? Come and take your chance at our fantastic tombola, packed with brilliant prizes just waiting to be won! Whether you’re hoping for a special treat, a fun surprise, or simply love the thrill of drawing a winning ticket, our tombola is bursting with prizes to delight all ages.
Magic Show – 10:45-11:30
Puppet Show – 11:45-12:30
Magic Show – 2:00-2:45
Puppet Show – 3:00-3:45
Magic Show – 4:00-4:45
Outdoor activities at the Bandstand
Watch out for any special times advertised times on the day!
We want as many people as possible to have the chance to enjoy the activities we have on offer, like…
- Console Heaven Gaming Bus
- Circus Skills, bubbles and balloon activities
- Steel drum workshop
- Chill Zone
- Pamper Station
- Air Juggler
- Table Tennis
All activities are subject to age, capacity and availability – you may need to wait for a turn or come back when it is quieter.
For children aged 7 and over
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 van and come along to enjoy a gaming session.
It can be hard at such a busy event to find a space to sit quietly. This gazebo is for anyone who needs a slightly quieter space during the day.
You are also welcome to go over to the hotel and sit in the garden or bar area for some quiet time.
We have also allocated a bedroom for prayer and reflection room at the hotel. If you would like to use this room, you can request the key at the hotel reception.
Would you like to support DEBRA Retail but don’t have a shop nearby? If you’ve got a bit of room in the car, pop in any good‑quality clothing or new gifts you’d like to donate. Our amazing retail team will be on‑site, ready to whisk your pre‑loved treasures back to our stores. Look out for the donation stations in the bandstand. And please sign up to Gift Aid (if applicable) at the same time to make your donation go further.
Step into our Wellbeing Zone and unwind with gentle, feel‑good treats designed to help you relax and reset.
✨ What’s on offer:
Soothing back massages (ages 18+)
Nail painting (ages 12+)
Fun hair accessories
Cloud gazing to calming, relaxing music
⏳ Limited places available
📍 Pre‑booking required at the zone
Treat yourself to a peaceful pause – book your slot early to avoid missing out.
Join us for a paper butterfly launch—a creative moment of hope, remembrance and togetherness.
Food and drink
Dietary requirements and allergies
We have taken your dietary requirements and allergies from your application form. If these have changed, let us know by 28 April so that the hotel can be updated.
When choosing from a buffet or being served a meal, you should make yourself known to Drayton Manor staff if you have any dietary requirements or allergies.
You can find all the event food menus below.
Important note: Please ask to see the dietary and allergen sheets at the event.
Soft food
Please speak to Drayton Manor restaurant staff if you need your meal to be softened.
Friday night
A buffet will be available in the hotel Park View Suite (through the hotel bar) from 18:30 to 20:30. 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.
Saturday daytime
Tea, coffee, water and squash will be available all day at the refreshment’s stations.
The Hamilton Suite bar will also be open for you to purchase alternative soft drinks of your choice. Alcohol is not available during the daytime event.
The hotel Parkland restaurant and garden room, 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.
Takeaway boxes will be available so that a member of your party can collect lunch and bring it back for you if needed.
If you are attending the event on your own and require assistance, please contact membership@debra.org.uk by Monday 11 May.
Ice creams will be available outside after you have had your main course (12:15-2pm).
12:00- Lunch sitting 1*
12:30- Lunch sitting 2*
13:15- Lunch sitting 3*
End of day snack 4:45 – 5:15
An end of day snack is available to everyone, over at the hotel, for you to enjoy in the lovely garden, or bar area.
Menus
Come and enjoy a sweet treat on us! An ice cream van will be at the event, and every member will receive a token to redeem for a free ice cream. Don’t miss out!
- Pom Bears/ Quavers/ Skips
- Fresh fruit
- Mixed fruit tea bread
Adults and children will be served a tasty 2 course meal, with additional side dishes to share on the table.
Alternative meals will be served are to suit dietary requirements that you have told us about in advance.
No alternative dishes are available than those served to you.
A bucket of mixed drinks, a bottle of white wine and water will be on the table. You can purchase alternative/additional drinks of your choice at the bar.