Patient organizations lie at the heart of the rare disease market segment. These groups are usually founded by a person with the disease, or a family member of someone with the disease, to support patients and their families. Member support is a key component of their mission.

During my career, I have had the pleasure of engaging with a number of patient organizations. Their members are some of the more passionate people I have ever met. And rightfully so. The beauty of engaging with these organizations is born out of a common focus: to serve the patient population to the best of our ability. 

Because there is a gap in the understanding of the natural history of most rare diseases, members of a patient organization can provide vital information that helps marketers understand the disease, the diagnosis dilemma, and the daily challenges faced. Marketers can then use this knowledge to educate HCPs and payers, inform marketing initiatives, and drive positive outcomes.

Patient organizations also provide opportunities to engage with patients on multiple levels. Both the Pharmaceutical Company and the patient organization want to serve patients and their families to the maximum level possible. Initiatives engage patients can be collaborated on and this paves the way for the company representatives to build their own reputation.

It is important to establish a relationship of mutual respect and trust. passion is so high, there are times when education is needed on the processes of the individual Pharmaceutical Company that may limit the free flow of information.

However, an honest and open relationship will solve many of the conflicts that arise. An answer of “no” is really not acceptable. Provide alternative options—that’s what will foster a stronger relationship. Constant communication and appropriate updates are critical to creating the a strong, mutually beneficial relationship.

-Emil Andrusko, Managing Director | Principal