Epidermolysis Bullosa (EB) affects around five thousand people in the UK and half a million worldwide. It comes in many forms and can be fatal. It can also be life-changing for both those affected by it and for the families who care for them.

DEBRA is the only charity in the UK dedicated to supporting people with EB - providing information, practical and emotional support, financial help and advice, and respite breaks. It also funds pioneering research to find effective treatments and ultimately a cure for the disorder.

The challenge: 
DEBRA's wide range of support services and its chain of shops staffed by volunteers mean that effective communication within the organisation is essential. But the charity's communications team was part of its fundraising team; it produced leaflets and posters but was not being used as a resource for the whole charity.

Hayley Epps, PR & Communications Manager, wanted to change this. She wanted communications to become more centralised in order to support everyone within DEBRA. A comms strategy was needed, but neither Hayley nor her team had experience in this area.   

What we did: 
Hayley approached Media Trust, who put her in touch with freelance marketing consultant Verity Clifton. Verity hadn't worked in the charity sector and wasn't sure whether her corporate experience was going to be relevant, but Hayley was sure that Verity's outside perspective would work to their advantage.

Verity met Hayley's team and, after talking through the proces of creating a comms strategy, insisted that senior managers would need to be involved if it was to work. She agreed to facilitate a communications workshop to bring them all together. Following the workshop it was decided that a Fundraising and Communications Committee was needed, and Verity agreed to join in.

'Verity really led the meeting and made sure it didn't go off track. Feedback was really good from the senior management team and I don't think it would have happened had Verity not been involved', Hayley recalls with enthusiasm.

Hayley went on to outline a comms plan based on what was discussed at the workshop and alongside Verity hopes the new comms strategy will soon be in place to guide DEBRA's work over the next few years. In the meantime, Verity is on hand to give her any advice or guidance when it is needed.   

'Verity has helped us think more strategically. She help break down the strategic process to make it manageable - before she helped I felt overwhelmed and wasn't sure where to start!' acknowledged Hayley.

With the new comms strategy in place, the different departments within DEBRA will be able to reach their aims and objectives more effectively, whether that is recruiting volunteers, fundraising, carrying out vital research, or - most importantly - reaching, supporting, and improving the quality of life for more people suffering from EB.

For more information, call 020 7871 5645 or email

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