Anna Hermann

Anna Hermann

Principal Medical Writer

Mastering the rare disease challenge

Orphan drugs are few and far between. Long awaited by patients and physicians it should be an easy job to market them. However, diagnosis comes before treatment and with more than 6,000 rare diseases prevalent in Europe alone, it is little surprising that physicians are vague on specifics.

Clinicians have often little or no concept of how diseases like sarcoidosis or systemic sclerosis present themselves and have difficulty diagnosing them. According to a 2013 JRD survey patients with a rare condition on average see more than seven physicians before their disease is accurately determined. With an average of 4.8 years from onset of symptoms to correct diagnosis valuable treatment time is lost and negative impact for the patients accumulates. The resulting frustrations are immense. Imagine how it must feel for the clinician to be faced with the often severe symptoms of a rare disease without evidence or guidance to help decide an appropriate treatment regimen.

In rare disease indications like idiopathic pulmonary fibrosis it’s all about medical education. The first step of your orphan drug marketing plan is to identify any existing pockets of expertise if they exist. It is even more important to know the gaps in the knowledge of your target audience. Only when you understand the needs of your audience can you provide the information they need and consider valuable. Best clinical practice can then be established in an ongoing peer-to-peer dialogue.

Be it online training sessions or knowledge exchanges, an interactive programme is the key to success. Where does the orphan drug product manager start, though when the handful of experts in his/her indication are dispersed around the globe and budget is scarce?

The solution lies in customised communication that is digital, crosslinked, multichannel. The infill team have developed a range of resources, tools and techniques that enable rare disease experts around the world to learn and interact on the basis of patient case studies, even if they are located in different countries or on different continents. These networking tools are greatly appreciated by the physicians because they help improve diagnostic and disease management skills. Another key benefit is that customised content can be accessed wherever physicians are located, whenever they have time. This is a strategic tool to establish best practice in disease areas where only few experts exist. The added benefit from a marketing point of view it is that you build brand loyalty at the same time.

And there will still be money in the bank to focus on the patients too. There is a lot you can do, even when your budget does not stretch to dimensions of traditional marketing campaigns. In addition to standard offerings like patient websites, a YouTube channel, patient apps and ebooks are efficient ways to provide background to patients who often don’t have much credible information to rely on.

2015 PMEA Awards selected the IPF Digital Initiative infill developed for Boehringer Ingelheim as the winner in the Rare Disease and Orphan Drugs category.
Interested to hear more? Talk to Anna Hermann and the infill team by contacting us at or +49 2244 4054.