Our Community Support team have a wide range of skills, knowledge and experience to deliver a variety of support services for the EB community. We provide clear and accurate information about EB as well as support with issues which may impact everyday living, including benefits, employment, housing, school, emotional support, referrals to specialist healthcare and more. We work closely with specialist EB nurses, as well as other health and social care professionals to connect patients with the services they need to improve their quality of life.

Two of my children have been diagnosed with EB Simplex (EBS). DEBRA has helped me a lot, from suggesting special socks to helping to get access to wheelchairs for my children when they need to ‘save’ their feet, or it’s just too much for them to bear the horrendous pain of walking. Our EB Community Support Manager understands EB and how helpless you feel as a parent. That alone makes a huge difference.

DEBRA member 

If you need support, please contact the team on 01344 771961 and select option 1 or email [email protected]. You can also find individual contact details on the 'Meet the team' page. Our Community Support Team are only a call away Monday - Friday, 9am - 5pm. Outside of these hours you can email or leave a message and we will get back to you as soon as possible.

 

How we can help

Advocate, inform and empower - helping our members face the challenges that EB brings.

Advocacy – we can work with members to ensure their voice is heard and to help explain what EB is and how it can impact everyday life to other organisations including housing departments, a child's school, a workplace or social services.

Finances – we can help with financial queries such as household finances or debt problems and point people towards agencies or other useful information. As well as talking to our team, you can visit our dedicated financial support section. We also have funds available to support people through a DEBRA support grant in times of need and we can identify other grants and sources of financial help such as school uniform grants, direct payments and personal budgets. 

Benefits – we can help with the process of claiming benefits, including selection of eligible benefits, as well as assistance with forms such as explaining how your EB affects your daily life, adding medical details and helping to minimise the time taken to get a decision. If the situation arises, we are also able to help with appealing benefits-related decisions. Visit the financial support section for more information.

Significant life changes – we can support in times of change. For example, if a child is starting primary school or making the transition to higher education, moving home to live independently or looking at work options.

Carers and family support – we can help with respite or additional support at home, meaning carers are not overwhelmed by the care they provide and can spend quality time with the person they care for. We also provide guidance and information to carers and family members to help them manage the challenges presented by EB.

Peer support and social opportunities – we offer opportunities for people to get together and enjoy social activities online, and when restrictions allow, face to face events too. 

Emotional support - we provide emotional support and a listening ear to help people cope with the immense challenges living with EB can bring.

We are committed to supporting people and families living in the UK who are affected by EB. Becoming a member is free and makes it easier to access our services.

Translation services - if you find English difficult to understand, our Community Support Team can arrange for an interpreter to join your telephone call. We are able to fund this for you (through the funds raised by our supporters and in our charity). 

If you ask health and social care professionals, they may also be able to arrange for an interpreter to help you at a future appointment with them.

 

If you would like more information about the support we can provide, you can download or order our member services and community support information leaflet.

Click the button below to meet the team.

MEET THE TEAM

 

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