Part One – Importance of Engaging Patient Organizations

Market development for products within the rare disease therapeutic area is both rewarding and challenging. By its very definition, the rareness of a disease means there is often very little information or historical data available about it. This creates challenges for marketers and often adds more time and resources to the endeavor. In my 30-plus years of marketing experience, I have come to recognize that the success of any market development campaign hinges on developing key market insights. This is where engaging with patient organizations can be extremely beneficial.

Most rare diseases have patient organizations associated with them. These organizations primarily focus on providing support to patients with the disease (and their families) while also educating the general public about these ailments. In my career, however, I have found that there are also opportunities for collaboration with these organizations, most often when their goals and your brand’s goals align, such as around the need to engage patients.

The strategic decision to engage with a patient organization is an important one. Yes, it will provide you with a great deal of information that can increase your understanding of the disease, diagnosis journey, and impact on patients. But in exchange, you must consider what the organization needs. My involvement with numerous patient organizations suggests that they will expect an honest and open relationship, and that requires the frequent exchange of information, including updates on the development process. Communication will be particularly important if regulatory hurdles are encountered during the approval process. The decision on what and when to communicate should be decided before the engagement is initiated. Doing so will support a healthy relationship and a successful outcome for both parties.

-Emil Andrusko, Managing Director | Principal

Next week: Understanding patient needs