CASE STUDY

DEBRA UK

How PLMR Genesis supported DEBRA UK the national charity for people living with epidermolysis bullosa raise awareness of the charity and its campaigns with key political stakeholders.
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Client

DEBRA UK

Sector

Healthcare

Services provided

Public Affairs

The Situation

DEBRA UK is the national charity and patient support organisation for people living with epidermolysis bullosa (EB), a genetic condition which causes skin to blister and tear at the slightest touch.

In 2022 DEBRA UK launched a campaign to secure funding for drug repurposing trials which could lead to existing drugs being approved for the treatment of EB. The campaign sought to raise £10 million of funding from the Government to finance research trials to examine the efficacy of six specific anti-inflammatory drugs.

DEBRA UK approached PLMR Genesis to support their campaign to raise awareness of the charity and their campaign with key political stakeholders through various public affairs activity.

What we did

We began by creating an in depth stakeholder influence map that outlined the key political stakeholders and ranked them in terms of their potential influence on the campaign. This involved mapping approximately 50 political figures from all key parties across the UK. This stakeholder map was utilised throughout the campaign to identify individuals to contact with the relevant messaging.

Letters were written to over 200 individuals introducing DEBRA UK, their campaign, and inviting them to meet with the charity. Tailored versions these letters were drafted to ensure they are suitable for each stakeholder and to allow for further rounds of follow up.

Once meetings were arranged, PLMR Genesis drafted briefing documents to help provide an overview of how the individual could support DEBRA UK’s campaign.

To support this activity, an FOI request was put out to all 70 Integrated Case Systems across the UK to help further understand the EB landscape in healthcare across the UK. The responses to this request was further developed into a Policy Paper outlining the regional variations in the diagnosis and treatment for EB and their impacts on patients, carers, and the NHS.

The Result

Following the outreach campaign to all key political stakeholders, PLMR Genesis managed to successfully organise seven meetings between MPs and DEBRA UK. Throughout these meetings the DEBRA UK team were able to raise awareness of the charity and their campaign and ask those MPs for their support.

These meetings resulted in multiple questions being raised in Parliament surrounding the Government’s support of DEBRA UK’s cause. Additionally, as a result of these meetings, in May 2023 an adjournment debate held in Parliament to raise key questions to the Minister for Health and Secondary Care.

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PLMR’s crisis communications experience is second to none, and includes pre-emptive and reactive work across traditional and social media channels. We work with a range of organisations to offer critical communication support when they are faced with difficult and challenging scenarios.