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Detective Work in the Rare Disease Digital Landscape


Brand Insights - Thought Leadership | Paid Program

Craig Mattes

Craig Mattes

Michelle Petroff

Michelle Petroff

People living with rare diseases are searching for the life-changing information and treatment only you can provide, and you just need to know how to follow the clues to find them.

The vast digital landscape gives us the power to reach receptive ears, but maximizing those opportunities requires a little bit of reading between the lines to engineer an effective approach.

Below are three key principles that have helped our team at Fingerpaint unleash our inner Sherlock Holmes and create effective programs across a range of rare conditions.


The most successful omnichannel programs are born out of an idea brought forward by marketers, advocates, or data analysts that can be tested. For example, an advocacy group alerted our team to the high likelihood that a large population of undiagnosed people living with a certain rare disease were being “graduated” to adult doctors and lost to follow-up after turning 18. We ran a pilot program targeting geographies close to children’s hospitals familiar with this condition and were able to expedite diagnosis for several young adults who had been untreated for years. Through this geotargeted program, we were able to actually see a number of patients started on therapy within a year from program implementation.

Knowing your disease state inside and out is critical in rare disease. We’re constantly mining online communities, talking to advocacy groups, and considering quantitative and qualitative input from HCPs to help determine new approaches. Even anecdotal case studies have helped us reach new audiences. One HCP’s experience may highlight a hidden but prevalent challenge that our approach can help overcome.

Omnichannel gives us a unique opportunity to test multiple approaches effectively and efficiently. We can pilot programs that test the theories that just might be the key to finding new patients for treatment.


Years ago, when we were relying on sales representative feedback to tell us how our message was performing, we never dreamed of the dashboards that give us near real-time insight into our strategic approach. Now that we have this constant stream of information, the onus is on us to translate the data and put them to good use.

When strategists, marketers, and data analysts get together to discuss what’s happening in a market, magic happens. This multidisciplinary approach has been particularly helpful for us in creating resources for clinical trial recruitment. Working with patient advocacy groups, we can learn to speak the language of patients who are searching for their own answers. Whether our audience is searching for a diagnosis, treatment, or simply reassurance, the data we receive help us create online experiences that comprehensively address their concerns. Analyzing data surrounding areas of research has not only allowed us to reach receptive ears but also taught us how to turn interest into action via the right messaging.


Omnichannel is more about the experience than the channels. While true omnichannel goes beyond email and sales to personalize and synchronize content across channels like display media, mobile, and connected TV, the purpose is to orchestrate seamless and meaningful experiences. But when you strip away all of the marketing lingo, it’s about the relationship between your brand and your customers. Relationships are built when one touchpoint flows into the next, creating positive brand experiences. And when executed properly, these positive experiences can have a dramatic impact for your customers and your brand.

Omnichannel platforms give us never-before-seen capabilities. Looking for details, investigating, and remaining curious about the world of our patients, caregivers, and healthcare providers are critical as we attempt to provide more information—and hope—to people living with rare diseases.

Craig Mattes is General Manager at Fingerpaint and may be reached at cmattes@fingerpaint.com. Michelle Petroff is Managing Director, Activation and Experience Strategy, at Fingerpaint and may be reached at mpetroff@fingerpaint.com. Fingerpaint is a Fingerpaint Group company.