How Rare Disease Marketing Will Stretch Beyond the Patient

The foundation of a strong rare disease marketing program must be built on the comprehensive knowledge of how the life-altering disease impacts all areas of a patient’s life.

The foundation of a strong rare disease marketing program must be built on the comprehensive knowledge of how the life-altering disease impacts all areas of a patient’s life. Jonathan Romeo, brand strategy in Fingerpaint’s Saratoga Springs office, and Laura Wilson, patient strategy in Fingerpaint’s Cedar Knoll’s office, addressed some of the factors that can influence a strong program.

What makes marketing a rare disease product so specialized?

Jonathan Romeo: There are many different elements that make dealing with rare conditions unique. One thing that immediately rises to the surface is the challenge associated with identifying and diagnosing patients.

When it comes to enabling patient identification, multiple stakeholders and factors need to be considered. First: How do you activate patients to recognize that something may be different about the symptoms they are experiencing and to talk to their care teams? Second: How do you educate HCPs on conditions that have small patient populations, limited historical case information, and minimal treatment options so they can appropriately manage patients who come to them?

Luckily, emerging technology is making this process easier by providing new avenues to educate and bring together the various stakeholders. From interactive disease education to dynamic symptom-monitoring applications and digital research tools, technology is helping us to better understand the presentation of these conditions, with the ultimate goal being to augment the diagnostic journey and connect the right patients with the right treatments earlier.

Fingerpaint recently attended the NORD Rare Disease Summit. What were some of the major takeaways?

Laura Wilson: We live in a time when we have the opportunity to alter the destiny of someone’s life because of the vast amount of innovation happening in the industry we are lucky enough to be a part of. But what good is it to develop cutting-edge therapies if the people who need them most don’t have access to them in a timely manner?

Of course, the conversations about access centered around closed formularies and cost, but there was a lot of discussion about how to expedite the regulatory processes. One well-received solution was the Rare Disease Cures Accelerator, an integrated database and analytics hub designed to be used in building novel tools to accelerate drug development across rare diseases.

Care partners are also a critical component of rare disease marketing. There was no shortage of conversation about them-or led by them-during the summit. Not only must the complex journey of treatment for those with a rare disease be fully understood, but the same priority must also be given to the care partner’s journey, too.

What does the future of rare disease marketing look like?

Wilson: Families who experience rare diseases need more than product information; they need education and support. They need tools to teach themselves, and others, about daily disease management while also advocating for effective treatment.

Romeo: Technology can help us build those things. Using digital tools, we are now able to acquire and analyze patient data like never before. These data can help us better characterize the true burden of these rare conditions for patients and their families. This can then be translated into information that can be used by organizations to craft appropriate patient support programs for those affected.

In addition, it can be used to better educate those physicians who are researching a rare condition because, in some cases, there is little information available about the disease and its treatment.

Wilson: Marketing support must go beyond product management. As marketers, we need to set our egos aside and truly listen to the needs of patients and care partners-like the mom of a gene therapy patient who spoke at the Rare Disease Summit. She talked about how social isolation is something that many families face because, simply put, there are not many people going through the same thing. Yet, there are not a lot of programs to address this.

Romeo: This is why you are going to start seeing brands provide a more concierge-style approach to services for patients and their care partners aimed at providing the support they need when they need it.

Jonathan Romeo can be reached at jromeo@fingerpaint.com. Laura Wilson can be reached at lwilson@fingerpaint.com.