Rare Disease

Rare But Not Forgotten: Shining a Light on Advertising and Marketing in the Rare Disease Space

by Lanmark360


May 2, 2018

For healthcare marketing professionals, it’s imperative that we ingrain the fundamental rules of healthcare marketing and advertising into our everyday lives. That is, until we put aside a big pharma project and pick up a job brief from a small patient advocacy group that needs our help creating a voice for Balo Disease—something no one’s ever heard of. This is the rare disease space: a specialized area in our industry where we must nurture audiences in a distinct way, use unique strategies to create patient-centric messaging, and toss out the standards we’re used to.

Lung cancer, diabetes, and fibromyalgia are three diseases that couldn’t be further apart on the pathological or clinical spectra. They manifest different symptoms, require different forms of testing, and are just generally dissimilar. However, what they do have in common is a dominating presence within the global pharmaceutical market (eg drug research and development, advertising, sales, etc) because they’re all frequently occurring diseases that affect large numbers of the population.

Think about being home on any old afternoon: you’re flipping through TV channels or browsing YouTube videos and stumble upon one of those consumer-professional targeted drug advertisements. You know, the commercials that tell the one-minute story of an understandably distressed patient facing a diagnosis, who then gets prescribed drug X and now feels like he or she can move mountains. More times than not, these ads are promoting therapies that help patients suffering from one of the many prevalent diseases, such as psoriasis or bipolar depression. What they probably won’t be promoting are drugs that treat acromegaly or Ehlers-Danlos syndrome because those are rare diseases.

If it were up to us, for every “mainstream” disease drug ad, there would be two rare disease drug ads to follow. Not because we want to minimize the value of the former, but because we know how critical awareness is for rare diseases and realize an arthritis “wave” is equivalent to a Duchenne muscular dystrophy “ripple,” if you will. Over the years, Lanmark360 has partnered with many clients in this space to help market their drug therapies and raise the level of awareness surrounding, for instance, Prader-Willi syndrome and Turner syndrome through directed initiatives.

Rare diseases are called “rare” for several reasons. Two being that fewer people know about them and fewer people have them. For instance, what’s your initial reaction when you hear the name Tay-Sachs disease or Rabson-Mendenhall syndrome? If it’s a head scratch, you’re not alone. Because these diseases affect such few people, they’re oftentimes obscure in the minds of physicians, scientists, and healthcare marketers like you and I. Although we can’t change what the medical and pharmaceutical industries are doing—or not doing—to promote rare disease awareness, we can help to effectively market and advertise the space by applying a couple of simple rules to our strategies.

Rule #1: Remember your key audience (but don’t forget about medical professionals)

According to the article “A Nuanced Message: Marketing to the Rare Diseases Community” published in PharmaVOICE, “Directing campaigns toward physicians don’t work because unlike large therapeutic categories, the patients and their caregivers must be front and center.” This means our basic objective as marketers is to make patient-centricity the guiding light to everything we do when advertising in this specialized space.

Most physicians aren’t and can’t be as invested in rare diseases as they are with cancer, diabetes, and others part of large therapeutic categories. This is why we have to focus efforts on reaching patients and families: those who have the largest investment, not because they want to, but because they have to. Not only are they the ones personally affected, but they also at times take on the responsibility of becoming their own driving force to help advocacy groups propel pharmaceutical companies to get the ball rolling on the development of orphan drugs. This, echoed in the article, is what’s considered the “biggest difference between rare diseases and more traditional pharma.”

Rule #2: Start with education, continue with education, and end with education

Education matters in all markets, but for rare diseases it goes far beyond being an important component of a marketing plan or campaign and should be the core of an initiative. As mentioned earlier, rare diseases are rare diseases in part because not many people know about them; and that’s why providing learning opportunities is pivotal. With this in mind, physicians and other medical professionals could potentially help expand awareness and ultimately become part of the action if the right education is there.

Patients and caregivers also benefit when education is at the forefront. After all, to them rare diseases aren’t rare diseases at all; they’re what’s stopping themselves or the people they love most from living long and fulfilling lives. That being said, they’re desperate to learn as much as possible about their disease and knowing this, we need to give them the education they want.

After building a close relationship with JAR of Hope, a nonprofit organization and patient advocacy group for Duchenne muscular dystrophy (DMD), we’ve applied both of these rules and can confirm their efficacy by the community’s response to our patient-centric initiatives (eg Hands on the Floor Push-Up Campaign), PR and social media plans, and other approaches that have led to expanded awareness for the DMD community. Nevertheless, we know that successful marketing in this space isn’t encompassed in just two rules and understand that continually learning and staying in the know is essential to making rare diseases a little less rare.

Do you have specific questions on how to reach your rare disease audiences? Let us know and we’ll be happy to answer them. In the meantime, check out our agency capabilities sheet here.


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