Excellence in Patient/Consumer Health Programmes

Summary of work

Hereditary angioedema (HAE) is a rare, inherited disease thought to affect just 1,500 people in the UK. As a market leader in rare diseases, CSL Behring wanted to lend its support to the HAE community in order to improve patient outcomes, focusing on two issues; first, the average time to diagnosis in the UK is 10 years, partly as a result of low awareness of the condition among undiagnosed patients; secondly, the rarity of the condition makes for a disparate patient population and so investment in online resources is considered essential by the community. A partnership approach with the national patient advocacy group, HAE UK, created an educational initiative for the diagnosed community as a first step, followed by media outreach and online campaign which ‘cast the net wide’ for undiagnosed patients. The result? A new benchmark for online education coupled with improved awareness of symptoms among those people previously unaware of the condition, both of which helped to deliver an increase in patient group membership and engagement.

Judges comments

This was a very brave campaign that really focused on the patient, helping people identify their symptoms and go to a healthcare professional, delivering real measureable outcomes that show true behavioural change.