Rare disease marketing

Strategic digital tools

Grasping the specific nature rare diseases is critical to developing an impactful communications campaign. These campaigns can be effectively supported by strategic digital tools that effectively respond to the real communication needs of rare diseases and their therapeutic brands. With specifically tailored tools, healthcare professionals can be better prepared to help their patients get the treatments they need.

Simplify disease recognition with digital diagnostic pathways

Rare or « orphan » diseases affect such a small percentage of the population that physicians may only see a few cases during their medical careers. They can have limited exposure to knowledge about the disease and little to no awareness of the treatment options available. As clinical manifestations of rare diseases can be similar to other more common conditions, critical errors of misdiagnosis and ineffective therapeutic decisions can leave patients at risk of severe, life-threatening consequences. That’s why it is so important to equip healthcare professionals with efficient ways to recognise and diagnose these conditions.

Simple and clear diagnostic pathways can transform complicated, overlapping pathological differentiation into a user-friendly, visually impactful decision trees that can facilitate an accurate and rapid diagnosis. These pathways can be presented in a step-by-step, digital format, allowing the physician to think through the process and better engage with the diagnostic criteria. To reinforce his/her knowledge, the pathway can be adapted to websites, smartphone applications and/or widgets, while being supported by printed, quick reference cards, offering the doctor several go-to tools when coming across certain clinical presentations.

Highlight patient types with interactive case studies

Although rare diseases have some predictable clinical presentations, case report literature demonstrates that every patient is unique. Rare diseases research is challenging in that there are very few cases upon which researchers may draw conclusions, sometimes fewer than 100 cases in the world.1 Providing detailed examples of a variety of initial and lifelong manifestations can be used to broaden the perspective of healthcare professionals on patient presentation. As many rare diseases are clinically severe with high rates of mortality and morbidity, it is important that physicians have the insight needed to not let one of these patients slip through the cracks.

Digital patient cases can be developed in order to streamline the presentation of each patient story for use on iPads in the field or touchscreens at congresses. Difficult to follow case content can be evolved into engaging, interactive patient stories, as the customer follows the decision making of the study investigator while responding to key questions. Case study applications can be used to organize and sort key case criteria internal organisation or quick access in front of a physician. Formats can be adapted to natural history studies to highlight certain pathological aspects of the rare disease or treatment focused to highlight efficacy and safety outcomes.

Employ digital tools to facilitate follow-up

When it comes to rare diseases, every patient matters. In Europe, a disorder is considered as rare when it affects less than 1 in 2000.1 Some conditions may only occur in a handful of patients in the EU, and others can as many as 245,000.1 That’s why patient follow up is essential. Field representatives that identify patients through clinicians or a hospital groups can help support physicians from diagnosis, treatment initiation and long-term disease management decisions.

Internal follow-up tools can be implemented to help support patient follow-up and ongoing field objectives. These tools can facilitate organization, simplify physician targeting, and track key activities. Follow-up tools that are personalized to your business can to assure that physicians and patients have the support that they need.

Communication about rare diseases has specific requirements that can benefit from specific digital tools.  Just because a disease is rare, doesn’t mean that awareness about it and its treatments have to be. Employing right digital tools can help to leverage key rare disease communication initiatives.


  1. Common Issues in Drug Development Guidance for Industry (FDA) Available here.
  2. Eurodis : Rare diseases Europe Available here.