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DEBRA UK Member Services – Support for the EB community
Member services is the umbrella term for everything that we as a charity offer to our members – people living with or directly affected by all types of EB in the UK who are part of our DEBRA UK membership scheme.
Become a DEBRA UK member
The member services offer includes access to the DEBRA EB Community Support Team, discounted holiday homes, support grants, face-to-face and virtual EB community events, our involvement network and more.
The member services offer could be viewed a bit like an umbrella; you might not need it all the time but it’s useful to have it close to hand for when you do.
We offer support, information, resources and opportunities for people of every age with every type of EB.
Below you will find more information about our member services. However, if you can’t find the information you need or you’d simply prefer to talk to someone, please contact us, we’re here to help.
The DEBRA EB Community Support Team are here to support our members on the phone, via email, virtually and in-person, whatever works for you. We offer a listening ear and provide practical support when you need it most, including:
- Supporting your goals and wellbeing.
- Using our experience in disability rights and EB to advocate on your behalf ensuring you are heard, your needs are recognised, and you have access to the services you need and are entitled to.
- From diagnosis onwards, if you have a need for specialist EB healthcare support we will work in partnership with the paediatric and adult EB healthcare teams to ensure you get the support you need.
- We will be there for you on your life-journey with EB offering support during times of change, times of difficulty, and all times in-between.
- We will support you to secure suitable housing, and access adaptations, specialist equipment, and social care.
The DEBRA EB Community Support Team has expertise in benefits and EB and if you are a member they can support you to access any benefits you may be entitled to, including disability benefits, direct payments and other financial help. The team can also signpost you to other funding options and grant-giving organisations, and through DEBRA UK you can apply for support grants to improve independence and quality of life. For more information, please visit our benefits and finance page.
Joining us as a member entitles you to stay in one of our holiday homes located in 5* rated holiday parks across the UK.
As a member you are entitled to highly discounted holiday stays which can be up to 75% lower than the market rate and each of our holiday homes has been adapted, as much as possible, to meet the diverse needs of people with all types of EB.
For more information and to book your stay, please visit our holiday homes page.
Events
We offer a range of events for members throughout the year which provide the opportunity to connect face-to-face or virtually (through online meetings), to share experiences, to hear from EB experts, and to discuss a variety of topics relevant to EB.
Our event programme also creates social opportunities where friendships can be forged, and members can feel part of a wider community.
Involvement opportunities
We put our members’ voices at the heart of everything we do. So, if you’d like to use your experience to help shape the future of our EB services, decide what research we’ll fund next, or to improve our member events, there is plenty to get involved with, including:
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- Joining our lived experience groups and sharing your stories and experiences to help raise awareness of EB.
- Getting involved in lobbying to help raise awareness of EB and needs of people with EB with your local politician.
- Becoming a trustee or volunteering in one of our 90+ retail stores located across England and Scotland
- Supporting us to raise funds and awareness.
Everyone who gets involved makes an enormous difference to us and to the whole EB community.
To find out more about member involvement opportunities at DEBRA UK, please visit our members participation page.
As a DEBRA UK member you’ll receive the latest research news and information about EB via email, newsletters, podcasts, social media, and in-person if you choose to attend our many in-person and virtual events. We also have a constantly growing hub of EB related information and resources available in the members zone of the DEBRA UK website.
DEBRA membership FAQ’s
DEBRA UK is the national charity and patient support organisation for people living with all types of inherited and acquired EB. The charity exists to provide information, resources, and support for the entire EB community in the UK; people of all ages living with, or directly affected by all types of EB.
DEBRA UK aims to improve quality of life for everyone living with or directly affected EB today and ensure that in the future there is an approved drug treatment for every type of EB.
You can find more information about us here.
We could think of 10 reasons!
1 – It’s completely free!
2 – Join us and you will be joining an EB community.
Join a community of almost 4,000 people in the UK living with or directly affected by EB, people who understand what it is like to live with the condition, people that you can connect with, make friendships with, and share ideas and experiences with.
3 – Membership gives you access to expert EB information and support.
The DEBRA EB Community Support Team provides a listening ear and offers expert EB information and support over the phone, virtually, and in-person as needed. The team understands EB and some of the challenges you may be facing. They are highly experienced in disability rights and EB, and can provide information, resources, and practical, financial, and emotional support and guidance. They can advocate on your behalf whether that is to get extra help at school, to talk to your GP about EB and your specific needs, to talk to your employer about any workplace adjustments needed, or to liaise with the NHS EB healthcare teams about any specific healthcare requirements you may have.
The team is there to provide you with the information and resources you need during times of change, times of difficulty, and all times in-between. Whether it’s at key life stages like the transition from primary to secondary education, to further education or employment, or with housing, accessing adaptations and mobility aids, independent living, social care, or bereavement support.
Whatever your life stage, and whatever your type of EB, the team are here for any query you may have, however big or small.
4 – Membership gives you access to free help with finance and benefits.
DEBRA’s EB Community Support Team can help you access benefits you may be entitled to, including assisting you with disability benefit applications or appeals.
They can also help with financial queries or debt problems and can signpost you to other useful financial information and resources, funding options, or grant-giving organisations.
5 – Members receive free regular EB updates, information, and resources.
As a member you will receive a free twice-yearly EB Matters newsletter packed full of news and information on EB research, events, member stories, involvement opportunities, plus regular EB Matters e-newsletters updating you on everything EB.
Members can also request copies of specialist publications to help educate others about EB, including the Debra the Zebra story book, created to help children educate their classmates about EB and what it means to live with the condition.
When you first join as a member you will also receive an ‘I have EB’ card and a medical emergency card. These vital resources contain the essential information that the public and healthcare professionals need to know about your EB and important information should you ever require medical attention.
6 – By being a member, you may be eligible for DEBRA UK support grants.
As a member you may be able to access support grants that could make life that bit easier for you, improving your independence, and quality of life.
Members can apply for support grants covering a wide range of items including travel and accommodation to ensure vital EB healthcare appointments can be attended, contributions towards discounted stays in DEBRA UK holiday homes, and specialist products that could help alleviate EB symptoms.
7 – Members can join EB community events.
DEBRA’s Member Services Team runs a series of in-person and on-line events exclusively for members throughout the year. These events provide opportunities to connect with other members of the EB community, to hear from EB experts, and to discuss topics relevant to EB.
8 – Members can get highly discounted breaks in DEBRA UK holiday homes.
As a member you are entitled to stay in one of our holiday homes at a highly discounted rate.
Our holiday homes can be found in award-winning 5* rated holiday parks in beautiful locations across the UK including Cornwall, the Lake District, the Jurassic Coast, North Wales, and the Norfolk Coast, and provide a great opportunity for respite and family time in facilities designed, as much as possible, to cater for the diverse needs of people living with all types of EB.
9 – Members get discounted shopping.
Members are entitled to a 10% discount off any purchase in our 90+ charity shops located throughout England and Scotland.
Our shops offer a range of great value, high quality pre-loved items including clothing, shoes and bags, household goods, electricals, and in certain stores, furniture.
10 – Membership gives you the opportunity to support our vital work, to have your say, and to BE the difference for EB.
By being a member, you can make a difference by signing up to our involvement network.
Members of our involvement network call upon their lived experiences of EB to help shape the future direction of the charity including the research projects we fund, the future of our EB services, and the events that we run for the EB community.
Through the involvement network, you as a member can make an enormous difference to the charity, what we do and how we do it, and to the whole community, ensuring everyone living with or directly affected by EB, gets the support and services they need most.
You are eligible to join us as a member if you live in the UK, and match any one of the following criteria:
- you have an EB diagnosis or are awaiting a diagnosis.
- are an immediate family member (parent, guardian, spouse/partner, child or sibling) or unpaid carer of someone with EB. An unpaid carer is an individual who provides EB support on a weekly basis or more.
- you are a healthcare professional (including paid carer) specialising in EB or have an interest in EB.
- you are a researcher specialising in EB or have an interest in EB.
It is free to join DEBRA UK and you can apply to join in minutes.
We want to support as many people with EB as we can, so, if you have immediate family members or friends with EB who are not currently members, please do encourage them to join so that they can benefit from our support services and member benefits too.
Don’t worry, DEBRA UK is part of a network of DEBRA patient support organisations that exist to support the global EB community.
To find details of your local DEBRA patient support organisation, please visit the DEBRA International website to find your DEBRA group.