By Erica Rivera, director of engagement strategy at AbelsonTaylor


• Combat patients’ pervasive isolation and frustrations with a soft place to land informationally and experientially.

• Patients are forced to become experts at advocating for themselves. Brands that build with an eye toward easing this burden will see success

• In rare disease, reducing disruption is disruptive. Give them back a part of their lives.


According to the National Organization for Rare Diseases 2019 Fact Sheet, more than 90 percent of the 7,000 known rare diseases do not have an FDA-approved treatment. It is a privilege to bring brands to market for the patients, caregivers, families and physicians who so badly need them. In order to effectively launch into the rare disease space, there are elements to consider that take us well beyond standard launch prep. It is these elements that will set one brand apart from another and contribute to a successful launch.


Patients as experts (or deserts) of information

Depending on the rare disease, some patient populations show a higher tendency to be more clinically educated about their condition. This often is a result of the long lead time to an accurate diagnosis. Depending on the disease, diagnosis times run from 4-10 years and often require over 5 specialists. All this while the patient is suffering with symptoms from an unknown source.

In many rare disease communities, we observe patients working together to help one another achieve diagnosis. They arm each other with a specific battery of tests or protocols to push for, direct toward more receptive local doctors or clinics, and shepherd a stranger through the process to finalize their diagnosis. This type of behavior trains patients to advocate for themselves while also equipping them with much more than a baseline understanding of their disease.

The flip side is a condition that is not on the radar of the patient at all. They have no idea what they are fighting, where to go and are crying HELP! to anyone who will listen. While all patients living with rare diseases battle the frustration of isolation, this pre-diagnosis state can be more troubling for the patient existing in a desert of information.

For brands, it is imperative to do the groundwork necessary to understand the landscape of patient knowledge across the particular disease state. Disease education initiatives must take this into consideration to provide a true benefit to the patient. Patient groups that are well-informed on their condition may need tools to educate schools or co-workers about their needs and challenges. The brand’s materials might run the gamut, from traditional pieces directed at patients to more innovative elements designed to support the patient accustomed to dealing with people who know nothing about their condition. Designing for the most impact happens by understanding the landscape of the patients’ knowledge and using that to inform the best way to maximize exposure and utility.


Uncover the similarities

It comes as no surprise that life with a rare disease is isolating. In fact, isolation is one of the hallmarks of the experience and is universal across all rare diseases. Living with a devastating condition is amplified by the lack of formal support, few doctors who understand or can treat rare diseases, and having to navigate daily life without the companionship of a community and shared experience. According to Global Genes, approximately 50% of rare diseases do not have a foundation or organization supporting their condition.

This isolation pushes patients to find ways to discover and connect with others who share their experience. Living in the digital, social media age has made it possible to make meaningful connections with more ease than ever before.

As a result, social listening is a common practice in order to uncover unmet needs, explore key milestones in the patient journey, and reveal decision-making insights of patients. Often during ongoing social listening, an array of influencers will begin to surface, and we can gain valuable insight from the way their leadership shapes a community. These influencers may establish norms that are quite specific to the condition and often reveal avenues for the brand to connect more meaningfully.

It is important to monitor for trends and look for the nuances in the way people with a specific condition connect with one another. Experience says each group will act uniquely based on the influencers in the community and their specific needs, driven by their disease. Uncovering these hidden similarities may provide a roadmap to meaningful resources and interactions with patients at launch and beyond.

For example, in a population whose members routinely share visual content with one another, the use of infographic or video-based materials built as snackable, sharable assets could gain early access to patients. In other populations, the rallying cry may be around their perception of themselves as warriors and heroes. They may even ally themselves with a mascot. Knowing the specifics lends authenticity when a brand reaches out to patients.


Society of consumption and instant experience

A couple of years ago Microsoft released a study that found the human attention span had dropped to 8 seconds, thereby becoming shorter than the attention span of a goldfish. Whether this is an accurate assessment of humans or goldfish, the heart of the matter is that modern humans perform multiple tasks layered on top of one another with increasingly urgent deadlines and the expectation of more accuracy in a relentless manner each and every day.

Let’s imagine a working mother of a small child with a rare disease. In one of her online support groups a new treatment has bubbled up in their discussion and she wants to find out more. It’s easy to assume that the brand’s information is critical to her (it is!) and that she will dedicate time to dig in and research.

The fallacy is to assume that her child’s rare disease means dedicated, focused time will be allotted in her day and that life’s pressures will melt away so she can learn. If anything, her time is more at a premium, and comes with emotional baggage to make each moment count.

It’s fair to imagine her exploration occurs while multi-tasking – an open tab on the work laptop sitting in the living room at night, a long-tail voice search while walking from one meeting to another, a reminder on Alexa that she keeps pushing back because of the ongoing exhaustion of worry or because she might be enjoying a moment of downtime with her family.

It is wise to plan for the brand’s core messages and resources to be consumed on the go, with interruptions and a touch of “so now what?” We must use the tools at our disposal as savvy digital strategists and innovators to make it easy for patients to save the data, share the information, assign it to a task for the future, plan for the next doctor’s appointment, and “talk” to the support program while doing something else. Lean on your deep understanding of challenges your brand’s patients face and build compassionate resources that make life easier.


And finally, disruption

The buzzword extraordinaire on the lips of so many. “Build me a disruptive experience so my brand stands out.” What is an extraordinarily disruptive event? How about having a medical condition that makes everyday life a painful, chronic reality magnified by the ever-present aspect of mystery – never a fine attribute in medicine. A patient living day to day hoping for ease, answers, viable treatments, and reduced shame; literally wishing for less disruption in each moment.

Consider the impact of building a brand experience that delivers treatment answers along with resources that minimize the disruption of their rare condition. Pharma is very good at building complex patient programs, but considerably less good at designing them to be a beneficial experience for those using them. Never is that more critical than in the rare disease universe where we must do more with less. Programs that are hard to navigate or force patients to consume material in their least preferred method work against themselves. Our brands should always remove complications and smooth the path striving for the least disruption possible to the patient.

There is no one-size-fits-all approach to launching a brand to rare disease patients. Although patients share foundational similarities as a result of being in the position of “other,” it is imperative that we approach our brand launch with compassion, utility, and an understanding of the patients’ uniqueness. We must also anticipate what tools and resources will be as supportive as the treatment that is launching.