Rare vs common diseases: key differences in educational approaches

Since the Orphan Drug Act was passed in 1983, pharmaceutical companies have increasingly focused on developing treatments for rare diseases. As a result, competition in the rare disease field is intensifying, with multiple therapies available for a growing number of these conditions. While not every rare disease has a treatment, the landscape is evolving, bringing new opportunities and challenges for clinicians and patients. This evolution requires a new way of thinking to educate clinicians and patients alike on these new treatments.

For common diseases, the approach to medical communications is often straightforward. Clinicians are well versed in the fundamentals of these diseases, from recognition and diagnosis to guideline-based management practices. Conditions like diabetes and heart disease are covered in medical training, allowing clinicians to easily identify symptoms and handle common comorbidities. For these diseases, medical communications often focuses on building on existing knowledge and practices, updating clinicians on advances or specific clinical nuances. It is often easier for clinicians to learn new information, because they have a framework to build on.

In contrast, rare diseases require a fundamentally different approach. Clinicians typically receive limited training on rare diseases as a whole, leaving gaps in their knowledge on how to recognise and manage these conditions. Furthermore, while a few rare diseases are relatively well known, the majority remain obscure. With an estimated 10,000 distinct rare conditions identified to date, it is unrealistic to expect clinicians to understand them all. However, one in 17 people are likely to be affected by a rare disease in their lifetime. So, clinicians should be encouraged to consider rare conditions when standard diagnostic approaches fail to provide answers.

For common diseases, medical communications often assume a baseline understanding of the disease’s aetiology and management. This allows education to focus on introducing new treatments and how they integrate into the existing therapeutic landscape.  Alternatively, it may focus on refining current approaches or challenging outdated practices. This could involve highlighting the latest clinical data or challenging ingrained methods that may no longer align with the latest evidence. Encouraging change in the context of common diseases requires balancing respect for established practices and challenging old ideas.

In the rare disease space, however, medical communications must take a very different approach. Most clinicians have limited, if any, experience with rare conditions. So, in addition to discussing treatment, medical education must also focus on the disease’s aetiology, presentation and distinguishing characteristics to ensure accurate diagnosis. This often involves guiding clinicians through the differential diagnosis process, highlighting characteristics that differentiate a rare disease from more familiar conditions and helping them remember these details long after their initial exposure. For rare diseases, the challenge lies not just in updating knowledge but in building it from the ground up – and making it memorable enough to be recalled even years later.

This difference in approach extends to the techniques and strategies used in communications. For common diseases, education may rely on familiar formats and frameworks that clinicians recognise and understand. In contrast, rare disease education must adopt more immersive methods, like storytelling, case studies and compelling visuals. Because rare diseases are unlikely to be encountered regularly, these approaches are essential for creating a lasting impression that clinicians can refer back to when necessary.

Ultimately, medical communications for common and rare diseases share the overarching goals to be scientifically accurate, clinically relevant and impactful, all in the service of improving patient care. However, the approaches diverge significantly based on the level of clinician familiarity and how frequently the diseases are encountered in practice. Common disease communications often revolve around refining knowledge and nudging clinicians to adapt and refine established practices, while rare disease communications must also focus on foundational education, often requiring creativity to ensure these rare conditions are remembered and understood. In both cases, effective communication must adapt to the unique needs and challenges of the audience, but for rare diseases, medical communications must do more than inform – they must inspire recognition, curiosity and commitment. In a healthcare landscape where rare conditions often go unnoticed, impactful education can mean the difference between a lifetime of misdiagnosis and a life-changing diagnosis.

At Emotive, we work extensively in the rare disease space, partnering with our clients to create memorable educational activities that have an outsized impact, with the goal of helping clinicians’ ability to diagnose and manage their patients. By keeping the patient at the heart of everything we do, we ensure a flow of creative ideas, delivering unique and effective programmes for our clients.

References are available on request.

Lisa Parker is Vice President, Medical at Emotive