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In Rare Diseases, Don’t Just Plan for the Empowered Patient

Marketers are rushing into rare disease positions as the job opportunities and product portfolio to treat these rare conditions dramatically expand. To the uninitiated, the allure of rare disease marketing is strengthened by the myth that all patients (and their families) have been empowered by their difficult circumstances, and that each is being treated by an expert in the field.

Rare Disease Patient MatrixIn consulting with organizations new to rare disease markets, most assume that patient marketing as a strategic lever is a foregone conclusion based on these false assumptions. In reality, to be successful in rare disease marketing, you need to plan your marketing efforts to address the reality for each of your patients as opposed to a marketing ideal.

Two key characteristics of rare disease markets are (1) the pre-diagnosis maze and (2) un-established referral patterns. Many patients with a rare disease endure a diagnosis journey that can take years. For example, average Cushing’s patient takes approximately 7 years to get diagnosed. This pre-diagnosis ‘maze’ results in a long journey that often negatively impacts patient attitudes and beliefs about the healthcare system. This journey can lead to a dichotomy of patient attitudes between despair and empowerment.

The un-established referral patterns seen in many rare markets result in wide spectrum of specialized care ranging from community-based physicians through to centers of excellence for the disease in question. Where patients end up along this spectrum is frequently dictated by which physician unlocks the mystery and correctly diagnoses the condition.

To illustrate the different types of patient experience, ROF created the ‘Rare Disease Treatment Experience Matrix’ in order to ensure that our clients are designing programs and services that effectively address the needs of all types of patients.

Working in rare disease requires an intimate understanding of these specialized markets. The above matrix is just one illustration of how ROF addresses conventional wisdom to aid Clients in developing and articulating the optimal patient strategy for all rare disease patients.

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