The Combo All Brand Marketers Need to Learn From Rare Disease Brands

Brands that treat rare diseases have tiny budgets with which to find tiny populations of mis- and undiagnosed patients, their caregivers and their healthcare professionals (HCPs). It requires a combination approach that deploys experienced experts and empowers them with precision engagement tools. But that shouldn’t be exclusive to this category! Let’s talk about that magic combination – and about what all life science marketers should be learning from rare. Without AI-powered tactics built on the latest best practices in data analytics, it’s impossible to find people with rare diseases. (A quick stat break: Up to half of patients with rare diseases remain undiagnosed, and while rare diseases affect fewer than 0.05% of the population, there are more than 10,000 rare diseases, meaning that all together, they’re about as prevalent as Type 2 diabetes.)  

Without the behavioral-science, medical-science, data-science and creative expertise to understand the journey of a patient and apply that knowledge to the data and its resulting insights, all the AI in the world won’t give you what you need to reach these patients and caregivers accurately or effectively. Helping people affected by rare diseases means understanding the importance of community and support, research funding and people devoted to finding answers against all odds. Every individual campaign requires a deep understanding of the condition, data, science and technology, which yields a customized approach that addresses the specific situation and people. This, of course, is true for all diseases, but particularly rare conditions.  

In our work with rare disease brands, we’ve done it all – met with every family in a clinical trial, launched the first gene therapies for conditions and had to demystify an entirely new type of treatment, created the most successful commercial launches in rare – and we’ve found that a creative, human-based approach that works directly with the impacted communities to co-create education and awareness materials always provides the most impact.  

Experts in rare disease marketing have decades of experience and understand how to liaise between patients, caregivers, brands, advocates and researchers to the benefit of all. And when they’re armed with the latest data analytics and MarTech solutions, they can make magic happen. 

Building awareness for rare disease brands requires precise, AI-powered targeting. We’ve seen how successful this can be, as in one example, where a rare brand was able to be 76 times more targeted than the disease’s prevalence, or another example, where the work generated 80% of the new patients who engaged in a trial of the therapy.  

In a third example, after using our proprietary RareInDex tool to analyze social media posts, we deployed our social care model to connect with more than 200 rare patients in an unbranded, entirely tailored, one-on-one conversation. One-hundred-forty-eight of those conversations received likes or replies in response, and the tactic garnered 100% positive sentiment. But approaches like these require a pitch-perfect understanding of what patients want and need, as well as how they prefer to be interacted with, to succeed.  

We’re incredibly proud to have been the only data and analytics organization invited to participate in a study with the NIH’s National Center for Advancing Translational Sciences on the impact of rare diseases.  

Historically, pharma has thought of rare diseases at outliers, as if they need to be handled differently. After serving 147 rare disease brands over 18 years, we believe the opposite is true: All of pharma can and should be learning from rare. Rare diseases are not a niche focus; they’re a microcosm of the challenges and opportunities facing the entire pharmaceutical industry. By applying the lessons of rare to other categories, we can accelerate personalized medicine and personalized marketing, improve patient engagement, bolster patient advocacy efforts and create more effective healthcare. 

Changing the conversation about rare isn’t just an aspiration. It’s a necessity. The rare disease space has shown us that we can find, connect with and treat patients in ways that were once unimaginable. By leveraging the passion and deep knowledge of rare disease marketing experts and the power of new AI tools, we can reshape the lives of patients, their caregivers and loved ones, and the HCPs who have dedicated their careers to helping them.