Delivering change through better rare disease communications

OPEN Health’s Richard Jones, Gemma Allen and Charlotte Richards discuss how pharma can utilise tools, channels and stakeholders to deliver change and enable better outcomes.

Many innovative therapies are being launched in rare disease following years of research that has been driven by the emergence of new technology and regulatory incentives. This brings high levels of hope and expectation to the rare disease community. Consequently, it’s vital that biotechnology and pharmaceutical companies cut through the noise to bring real understanding and informed decision making about the next generation of orphan drugs. Doing this requires communications that encompass the right mix of tools, methodologies, channels and people.

Exploring the challenges in rare disease through better communication strategies

OPEN Health recognises that there are multiple challenges in commercialising new therapies in rare disease and is leading future practice in communications by placing emphasis on a ‘patient first’ approach. This includes supporting Benjamin James’s recent analysis on what the future could look like for outcomes driven communications in this space. Benjamin is a trustee and patient advocate for DMD Pathfinders and has recently completed a Masters in Scientific Communications. This provides us with a valued perspective on how improvements can be made for the benefit of patients. A summary of his findings can be found here. 

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