With more and more orphan drugs coming to market (over 50 were released in 2017), rare disease marketing has the spotlight like never before.  Traditional pharma marketers, however, need to understand how this segment differs from the patients they have typically engaged with. Here are five key trends that marketers should consider to more effectively engage this audience.

1. Online info plays an important role for rare disease patients. In the U.S., 3 in 5 rare disease patients go online to figure out what condition they might have before consulting a doctor. Pharma can design and promote online condition assessment tools such as symptom checkers by optimizing for symptom-related keywords in search to help identify these patients and direct them to relevant online resources. 4 in 5 U.S. rare disease patients used online info to compare different treatment options.  At this stage in the patient journey, rare disease patients are looking primarily for efficacy info, side effect profile and patient testimonials.

2. Rare disease patients are more likely to visit condition websites than they are product websites.Nearly half (46%) of rare disease patients have used condition-specific websites (vs. 17% of online consumers, on average). Pharma can engage these patients by designing or sponsoring condition-specific websites, especially if they don’t have a product in the market yet or are looking to recruit patients for clinical trials.

3. However, pharma lacks credibility among these patients. Only 12% of U.S. rare disease patients think pharma companies are providing a better customer experience than they did two years ago, and 59% think pharma companies care more about profits more than patients. Marketers should look to establish credibility with these patients through provision of quality of life resources and by partnering with trusted patient advocacy groups.

4. Pharma needs to do more to help with access and affordability of rare disease treatments. Half (49%) of U.S. rare disease patients say their healthcare expenses have increased over the past two years. Among these cost-pinched patients, 33% are not aware of any Rx drug savings programs offered by a pharma company. Financial support offerings must be well-optimized in search and promoted on advocacy websites to increase awareness of available support.

5. Brand requesters are more likely to get the treatment they ask for. 31% of rare disease patients say they have requested a branded prescription drug at least once, and 86% of those ended up getting prescribed the drug that they requested.  It is imperative that rare disease marketers give this audience the right tools to have these discussions with healthcare professionals. One way they can expedite this process is by helping these patients arrive at a diagnosis more quickly, thereby speeding them to treatment and better health.


Want to better understand the patient experience and how you can best engage your patient audience? Our patient research spans 5 countries and 50 disease states, and our expert analysts are adept at weaving together traditional research and real world marketing data to help get you closer to the patient.

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