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Creating the Childhood Dementia Coalition and Platform

by Portland PR Ltd for BioMarin

Summary of work

Childhood dementia is a devastating disease, with parents watching their children gradually lose the ability to speak, see and walk. Political and public awareness of this rare disease is low, compounding diagnosis, access and service challenges. But Childhood Dementia is not one disease, it is several separate diseases with some shared symptoms and outcomes. To raise awareness of one individual disease (Batten disease, which is a focus for BioMarin), we realised we needed to broaden our approach to create an umbrella campaign around childhood dementia, to serve more patients and families and drive meaningful conversations with decision makers.

We convened a childhood dementia coalition of four groups from patient communities to co-create a visually arresting creative campaign. Capturing the highly emotive issue of children’s milestones: the Dementia Strikes Children Too campaign was born.

Through genuine collaboration with all coalition partners we navigated a complex landscape of individual needs to unify behind a common strategy brought to life via a striking, multi-channel visual campaign. We created a dedicated campaign hub (www.childhooddementia.co.uk) and executed a digital and media strategy including a Westminster Tube Station takeover to reach commuting MPs. This was followed by a parliamentary event putting patient group leaders directly in touch with decision makers.

Judges’ comments

There were clear aims, strategies and objectives throughout this campaign that did a great job in raising awareness and delivering on the stated goals. A strong example of a patient-led partnership and collaboration resulting in a positive outcome for all involved.