Laurie Bartolomeo, EVP, Creative Director, Dudnyk

Marketing to rare disease patient communities and advocacy groups should be focused on delivering meaningful support, not on selling. These groups have many unique needs. In order to form an emotional connection with them or develop any kind of lasting brand engagement, we need to first earn their trust. By spending more time listening and learning, we can create interactions that are truly enriching to the lives of people burdened by serious illnesses. Whether it is decreasing time to diagnosis, improving access to treatment, connecting families with the right providers and families in similar situations, or simply increasing awareness and advocacy, our goal should be to fulfill the needs of these communities in tangible, actionable ways. Providing real value is fundamental to all marketing, but more important than ever in the rare disease space.

Kathleen Nelson, chief scientific officer, Elevate Healthcare

The best relationships with patient communities and advocacy groups are characterized by the alignment of specific objectives. For example, a common experience among patients with rare diseases is the protracted time between experiencing symptoms and receiving a diagnosis. The fundamental goal of patient communities and advocacy groups is to share information that will speed up proper diagnosis and help patients get therapy. This objective dovetails with marketers’ objective of providing patients and healthcare providers with information on therapeutic options. Disease-awareness campaigns serve a particularly important role in the rare-disease space, in that they educate patients and healthcare providers alike. As a result, those providers may recognize the disease in their patients more rapidly. The best-case outcome is improved recognition and care for these patients — who often go on to become staunch advocates.

Laura Bartmess, VP, account director, AbelsonTaylor

In the realm of rare diseases, communities and advocacy groups amplify the smaller voices of people living with a devastating condition, like hemophilia or cystic fibrosis. Taken together, their voices have power. It’s less about what your brand wants to say and more about listening to the needs of these well-informed, engaged patients and caregivers. Marketers must seek to understand what the hot buttons are in the community and look for ways to help advance the community’s cause. This may be developing better education and training, partnering on an event, or finding a solution to an ongoing challenge. If you truly have the patient community’s interests at heart, you’ll create an opening for a dialogue that will enable your brand story to be heard.

Michael Rinaldo, EVP & general manager, DNA Communications

Dialogue and relationships are essential. Patients managing a rare disease want more than information. They want to have connection and conversation; they want the ability to share information, ideas, concerns and perspectives, because they often lack access to the channels and platforms that give patients a voice. They’re looking for champions as well as innovators. Marketers should meet with them early and often, from idea conception through the clinical-development process. They should attempt to cultivate a relationship characterized by open information exchange and mutual support, centered on the common concern for unmet patient needs. Members of these communities, in turn, will build on your understanding and enrich your thinking in rare-disease categories where personal connections are often as valuable as reams of marketing data. Carefully constructed collaboration with these groups will demonstrate empathy and commitment and optimize chances for commercial success.