For Rare Disease Marketing, Precision Starts with the Care Pathway

Written by Joe Post, Client Lead

For rare disease brands, traditional media planning can fall short when it relies on broad audience segments, conventional HCP lists, or channel-by-channel activation. The relevant patient population may be small and dispersed, while the route to diagnosis can span multiple specialties, referrals, tests, payers, caregivers, and advocacy communities.

For marketers, that complexity creates a familiar challenge: knowing the right audience is out there, but not always knowing where they are in the journey, who is influencing their next step, or which intervention can make a meaningful difference.

As nearly one in two new pharmaceutical approvals is now tied to an orphan or rare disease condition, the need for a more specialized model is increasing. CMI Media Group has formally launched its Rare Disease Center of Excellence (COE) to address that gap—helping marketers move from planning for scale to planning for precision.

Finding the “needle in a haystack”

Rare disease marketing is often described as finding a needle in a haystack. But the task is not simply locating a patient or prescriber; it is understanding the signals and relationships that can lead to diagnosis and appropriate treatment.

The COE starts by mapping the care pathway and the signals within it. Claims data, procedure codes, diagnostic test data, and custom research from CMI's Audience Intelligence team can help reveal referral patterns, diagnostic events, and other meaningful moments along the journey. 

Advanced HCP reclassification helps distinguish physicians who may identify or refer a patient from those who prescribe, allowing media strategies to reflect each clinician's role.

The approach is complemented by engagement with key opinion leaders, medical societies, advocacy groups, and other partners across the rare disease ecosystem. Together, these capabilities can help address symptom under-recognition, fragmented care, and payer hurdles that may delay diagnosis.

Connecting a journey that rarely happens in a straight line

Rare disease marketers are often tasked with solving multiple challenges at once: helping HCPs recognize an unfamiliar condition, supporting appropriate referral and testing, educating patients and caregivers who may have spent years searching for answers, and ultimately connecting those efforts around the same journey.

The COE is designed to bring those perspectives together. Rather than treating HCP, patient, and caregiver strategies as separate worksteams, teams can plan around the moments where their needs and behaviors intersect – creating a more connected experience across the path to diagnosis and treatment.

Bridging boutique expertise and agency scale

The purpose of the COE is to eliminate a choice that rare disease clients have historically faced: working with a specialized boutique that offers high-touch therapeutic expertise or a scaled agency with sophisticated data infrastructure, technology, and buying power.

Rare disease brands should not have to choose between specialized attention and scaled capability. CMI’s framework brings those capabilities together through dedicated talent, AI-enabled tools, tailored data integration, and curated media ecosystems. That combination enables teams to build highly specific strategies while maintaining the operational scale, activation capabilities, and efficiencies required to support a brand over time.

The COE builds on the agency’s experience launching more than 67 rare disease brands across nephrology, oncology, ophthalmology, cardiology, hematology, immunology, pulmonology, and rheumatology.

"Rare disease challenges some of the assumptions we've been taught to make as marketers. The most efficient tactic on paper isn't always the one that will find the patient who needs you. Sometimes precision means going deeper and doubling down in places where the numbers alone might tell you to pull back. That requires data, but it also requires experience and judgment – and an understanding of what's at stake for the patient behind every signal," says Joe Post, Client Lead, Engagement Strategy at CMI Media Group.

As AI accelerates, the human perspective matters more

AI enabled tools can help teams identify patterns across complex data, surface potential connections, and accelerate planning and optimization. But as technology becomes more powerful, human judgment becomes more – not less – important.

This is particularly true in rare disease. Behind every data point may be a patient or caregiver managing uncertainty, misdiagnosis, years of searching for answers, or an unfamiliar treatment decision. Understanding that experience requires more than an algorithm. It requires therapeutic expertise, content, and empathy.

Any use of AI in this space should be grounded in privacy-preserving practices, appropriate data governance, de-identification, applicable consent requirements, and human oversight. Technology should help teams understand systems and pathways—not attempt to expose individual patients. CMI’s use of AI-enabled tools sits alongside the expertise needed to interpret signals responsibly.

Measuring progress beyond reach

For rare disease brands, success cannot be defined by impressions or efficiency alone.

Measurement should reflect the problem the brand is actually trying to solve. Depending on the brand's objectives and available data, that may mean understanding whether the right HCPs are engaging, whether referral or testing behaviors are changing, whether patients and caregivers are finding meaningful support, or whether measurable friction along the journey is being reduced.

The Rare Disease COE is currently active across CMI Media Group’s internal planning teams and new business initiatives. It brings specialized expertise so brands can spend less time navigating complexity – and more time focused on the decisions that can make a difference for the rare disease communities that they serve.

To learn more, visit cmimediagroup.com/services or contact [email protected].