Become a member DEBRA Members, Isla and Andy Grist We are the national charity for people living with epidermolysis bullosa (EB) in the UK. We are committed to supporting the EB community with a range of services intended to enhance quality of life, whether they are members of DEBRA or not. However, becoming a member of DEBRA makes it easier to access our services and exclusive benefits. Just by becoming a member, you will also make a difference for the whole EB community. We have a dedicated team to support people living with EB by providing information and advice plus practical, financial, emotional support and advocacy. Becoming a member also offers opportunities to connect with others living with EB, attend specialist events and contribute to raising awareness and enhancing expertise in EB. DEBRA means a lot to us. They have helped us in so many ways. Any time I have a problem, our Community Support Manager provides expert advice, emotional support and useful practical and financial information we wouldn't otherwise have access to. DEBRA member You can become a free DEBRA member if you: have any type of EB are a relative, primary carer or partner of someone with EB. You can also become a member if you work with EB patients or specialise in EB as a: healthcare professional researcher Apply online to become a member If you have any questions or would like assistance to complete your application, our Member Services team will be happy to help you. You can email [email protected] or call us on 01344 771961 (option 1). Membership benefits Sharing experiences, advice and just generally meeting others who understand the difficulties of EB was really significant. DEBRA member Membership is free and entitles you to a range of benefits* including: our Community Support Team who offer information; practical, financial and emotional support; guidance; advocate on your behalf; and signpost members to other organisations and services which may be useful; DEBRA holiday homes* at award-winning 5-star parks around the UK, specially designed to be suitable for people living with EB. All available at discounted prices; a range of events* for members throughout the year. Online get-togethers, EB specialist talks, regional and national events; regular email newsletters sharing the latest insights about research and EB treatments, news, updates on new opportunities, and a variety of helpful information; member support grants* to improve independence and quality of life for people living with EB; discounts in our 100+ charity shops and selected product providers; opportunities to get involved, such as joining our lived experience groups, helping to shape our research, influence fundraising plans, sharing your stories, or volunteering. *Terms and conditions apply A look inside DEBRA's newest holiday home in Newquay. We are here to help you with the challenges you may face, and to offer a range of services that hopefully make a difference. You can find out more about our member benefits by reading the linked information above. Please do get in touch if you want to talk about anything we offer. DEBRA helps me to understand the advances in research being made whether that’s in working towards a cure or how to manage the condition better. DEBRA member Apply online to become a member As a DEBRA member you make a difference Becoming a member doesn’t just give you access to all these benefits. It helps DEBRA and the whole EB community. Just by becoming a member, you strengthen our community. The more members we have, the easier it is for us to show how many people are impacted by EB when we lobby other organisations and the government to improve services for everyone living with the condition. The more members who share their experiences, the better we can represent the whole EB community. It gives us a greater understanding of what people living with all types of EB are going through and what they need. For example, our members took part in our EB Insights Study and provided us with such comprehensive, invaluable data that we can use to get the EB community the support they need. And if you would like to get even more involved as a member, you will have the opportunity to: help to raise awareness of EB by sharing your story; help other people living with EB find DEBRA and become members to receive the support they need; help us decide what research we should fund next to find effective treatments. Let us know what is most important to you; enable us to give researchers, politicians, GPs and supporters a better understanding of how EB impacts your life. This can influence the direction of their research, policies and the support they give to people living with EB; advise DEBRA’s leaders on our plans as a charity, and make sure your voice is at the heart of everything we do. By getting involved, our members have influenced policies relating to EB, helped DEBRA decide how we spend our money on research, got certain types of EB approved for pre-implantation screening, educated new staff and volunteers about what it means to live with EB, and helped to get a new treatment for EB approved on the NHS. And so much more. Find out more here about how to get involved with DEBRA. Apply online to become a member Change your details If you are already a member but have changed your contact details, or would like to add others to your membership, please let us know via the change of details form. If you are not a member (i.e. you don't have a membership number; this may apply to donors, fundraisers, supporters, volunteers or retail customers) and would like to change your details with us, please contact us at [email protected] or complete our change of details form. If you have any queries, please email [email protected] or call us on 01344 771961 (option 1). We’re happy to help if you need assistance to complete the form. Get involved We offer a range of ways for members to get involved whether through sharing ideas and tips, helping to raise awareness of EB, connecting with others in the EB community or to support income raising. If you would like to support DEBRA UK or the EB community through us, or if you have something to share about your experience of living with EB, we'd love to hear from you: [email protected]. Here are some of the ways you can get involved as a member: Join an event Members have the opportunity to join various events – both online and in person. This can be a valuable way to connect with others who understand the challenges of EB, to make friends, share tips and have fun without having to explain your condition. We also have regular talks by experts such as EB Nutritionists, Podiatry specialists and more. It's always lovely to see other people with EB and it's great to have the opportunity to share knowledge and ask questions. DEBRA member Share your experience Some of the most valuable information for members comes from others in the EB community. By sharing with us an experience, a tip about a product or an EB friendly place to visit, we can then share this with other members to benefit more of the EB community. There is no experience or tip too big or small to share and you can remain anonymous if you wish. Contact our Membership Team via [email protected] to share your experience. Volunteer for us We always need volunteers to help run our retail stores across England and Scotland, or at fundraising events, conferences and other events. Volunteering can be extremely rewarding, helps you connect with your local community, make new friends, boost your skills and experience and enhances your wellbeing. Take a look at our volunteering section to find out more and apply. Become a member today Many thanks for setting us up as members. It’s great to know there is an organisation like DEBRA to support us through this new journey of ours. DEBRA member If you would like to benefit from DEBRA membership, please apply below, or if you have any questions, get in touch with the team at [email protected] or call 01344 771961 (option 1). Apply online to become a member | Change your details If you have any questions or would like assistance to complete your application, please email [email protected] or call us on 01344 771961 (option 1). Back to top of page Manage Cookie Preferences