Turning a rare disease PBS listing into a national story
- 2 days ago
- 1 min read
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.
