Marketing to the rare disease community presents a unique set of challenges — one that requires meaningful engagement with collaborative stakeholders.
Rare disease marketing requires pharmaceutical companies to abandon many of their most frequently employed strategies. While those marketing more mainstream products — cholesterol or diabetes treatments, for example — can reach millions through tried-and-true tactics and major media campaigns, rare disease marketers simply do not have that luxury. When it comes to reaching relatively tiny populations of proactive and highly engaged rare disease patients, success depends on a more creative, hands-on approach.
Targeting Small Populations
One of the most prohibitive challenges that rare disease marketers face lies in identifying the right patient populations. By definition, these groups include less than 200,000 people, and are oftentimes much smaller. This challenge is compounded by the fact that it can take many years for rare disease patients to receive an accurate diagnosis after gleaning conflicting insights from several physicians. However, this concentrated audience provides marketers more opportunities to build meaningful relationships with key industry players — and even patients.
A Motivated Patient Base
Rare disease patients and their caregivers are different from other groups in that they are extremely motivated information seekers. The internet has played a hugely important role in developing communities and networks for rare disease patients and their families to connect with one another and discuss available research. Finding information, locating specialty doctors, and meeting fellow patients has never been easier — marketers need only identify and assist in facilitating those digital conversations.
That’s where advocacy groups come in. Patients and caregivers often turn to these groups to gather information, support, and experience a sense of belonging. By developing creative partnerships with these organizations, marketers have the opportunity to connect with and gain the trust of the people to whom their message is most relevant.
A Strong Drug Development Pipeline
When contrasted to the average rate at which prescription drugs are brought to market, the rare disease drug development pipeline is notably strong. In fact, by 2020, the rare and orphan drug market is forecast to account for 20.2% of worldwide prescription drug sales (excluding generics) and total $178 billion in annual revenue.
Not only is a there a high demand for these drugs, but patient populations actively lobby for their development in order to consistently expand the often meager offerings available to them. Because patient populations are so small, the percentage of rare disease patients involved in clinical trials is necessarily well above average. This heightened engagement presents a unique opportunity for marketers to establish relationships within the community at the earliest stages of the clinical trial process.
An Ongoing Dialogue
Rare disease marketing adheres to unique — and consistently evolving — rubrics for success. But, if navigated strategically, the process can be extremely rewarding for all parties involved.
There are roughly 7,000 rare diseases currently identified, including 50% of all cancers. While these individual patient groups may be small, they together account for nearly 1 in in every 10 people in the U.S. The demand is there where drugs are available and it’s significant — marketers need only learn the patient’s language.
In contrast to traditional pharmaceutical outreach efforts, rare disease marketing is not simply a question of digital or multichannel campaigns, serving targeted ads, and leveraging established physician networks. Success depends on a holistic, engagement-focused approach that marries the implementation of industry-leading research insights with authentic dialogue between marketers, physicians, and patients.
These efforts — both online and offline — are essential to accelerating patient education, strengthening patient and caregiver communities, and empowering individuals navigating rare disease diagnosis.