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Effective communication is crucial in raising awareness and promoting adequate care for rare diseases, which affect over 350 million people worldwide. This calls for innovative strategies and collaboration between various stakeholders to tackle the challenges posed by these diseases. LLYC – a leading global communications, marketing, and public affairs consulting firm – sheds light on the crucial role of communication in advocating for people with rare diseases in its “Lobbying for good: effective communication is key in supporting rare disease care” report.
“The main challenge is to amplify the voices of individuals affected by rare diseases,” shared Giuliana Gregori, Healthcare and Advocacy Director at LLYC Brazil and one of the report’s authors. “We must go one step beyond awareness and actively mobilize to procure life-saving care. Joining forces with stakeholders from every sphere of the health ecosystem paves the way for a future with adequate understanding, treatment, and empathy. In this, communication can be a transformative tool to get results.”
Despite their name, rare diseases impact hundreds of millions of people worldwide, according to the latest estimate by Orphanet. Unfortunately, Latin America lacks adequate public policies to address these ailments, as revealed in a study published in The Lancet in February 2023. While Argentina, Brazil, and Chile have approved specific regulations to care for people with rare diseases between 2011 and 2015, more work needs to be done to ensure those with rare diseases have access to the care and support they need.
Effective communication can be a powerful tool to advance advocacy efforts and shift the focus from individual demands to collective causes. Such communication is critical to connecting patients with organizations, decision-makers, and the pharma industry, which can transform public policies and help allocate new resources to fight these ailments.
Read the full report here.
