July 2026
1 min read

Turning a rare disease PBS listing into a national story

When only around 500 Australians live with a condition, generating meaningful awareness requires the right story, spokespeople and strategy.

PBS listings are among the most important milestones in a medicine’s lifecycle, but they are also some of the most complex to communicate. Success requires a deep understanding of compliance, stakeholder management and the ability to translate highly technical information into stories that resonate with media and the wider community.

This was recently demonstrated through our work supporting CSL Behring’s PBS listing of Andembry for hereditary angioedema (HAE), a rare genetic condition affecting approximately 500 Australians. Despite its rarity, HAE can have a significant impact on quality of life, causing painful and unpredictable swelling attacks that can be life-threatening.

Rare disease communications present a unique challenge. With limited public awareness and a small patient population, campaigns must balance education, compliance and media appeal.

Our recent work supporting CSL Behring shows that even the rarest conditions can generate meaningful national coverage when paired with the right patient story, expert voices and a solid communications strategy.

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It’s not difficult for communications agencies to describe themselves as health-focused or experienced in the medical sector. It may be that a modest amount of health-related exposure triggers an idea in an agency about a new and lucrative area of work.This can generate a challenge for medical brand managers or pharmaceutical procurement professionals who are keen to identify agencies with genuine expertise in clinician-facing communications.In this article we offer some suggestions for identify
20.08.2026
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What do Australian pharmaceutical companies really want from their communications partners? Do they want their agencies to be versed in AI and rich in cool tech tools? Or do they want strategic guidance, reliable service and industry knowledge?As the founder of an agency that specialises in health PR, the question of what pharmaceutical clients really want is one that has kept me awake on many a restless night.I’ve slept a bit better to be honest

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