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How the EB Community Support team can help you

How the EB Community Support team can help you

The DEBRA EB Community Support team directly helps people living with EB by forging close working relationships with specialist EB nurses and other health and social care professionals to connect clients with the services that they need to improve their quality of life.

How we can help:

  • Advocacy – When you feel your voice hasn't been heard or you have lost energy to pursue a goal, such as entering education or living independently, we can work with you to explain your needs and views to other organisations including housing departments, a child's school or a workplace or social services.
  • Benefits – We can help you with the process of claiming benefits, including showing you which benefits you may be able to claim, and give assistance with forms and explanations of your type of EB. If the situation arises, we are also able to help you with appealing benefits-related decisions.
  • Significant life changes – We can help support you in times of change. For example, if your child is starting primary school or making the transition to higher education, moving home to live independently and looking at work options.
  • Carers and family support – We are here to help carers or other family members manage the challenges presented by EB with advice and support.
  • Finances – We can help you find out how to manage household finances or debt problems and point you towards other agencies or useful information. We also have limited funds available to support people through a DEBRA Community Support Grant in times of extreme need.
  • Peer support and social opportunities – We offer opportunities for people to get together and enjoy social activities, such as Members’ Day.

If you need any support or advice then please contact the EB Community Support team.

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Lackshhya's story

Lackshhya's story

"My advice to anyone with EB is to get in touch with DEBRA because it’s good to meet other families who are coping with EB to talk and share thoughts and ideas.” Lackshhya’s Mum


Be part of our EB Community

Be part of our EB Community

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