by Rory Stanton, Director of Patient Research

With Rare Disease Day happening last week, Twitter was flooded with comments and tweets from rare disease patients. Thirty million people in the US live with rare diseases, only a small fraction of which are currently treatable with prescription drugs. Given the small number of patients afflicted with any one rare disease, brands often feel limited in understanding their needs. Digital touchpoints are an essential part of the rare disease patient experience, and digital engagement holds enormous potential to help brands get closer to these patients. Here are some key insights that have emerged from our research:

  • Rare disease patients turn to digital sources for info along the health journey. They are twice as likely as average consumers to research a prescription drug online in the first few weeks after diagnosis, and 3 in 5 rare disease patients go online after receiving a prescription. For pharma brands, this opens a window of opportunity to engage these patients through digital channels in the critical first few weeks of learning about their disease.


  • However, pharma resources are not a one-stop info shop for these patients. Thirty percent of rare disease patients reported that they don’t get all the information they need from pharma websites. Thus, they use multiple web destinations to triangulate information about their care. Brands should look beyond owned digital properties to engage patients by developing atomized content that can be distributed across multiple publisher sites and health destinations. 


  • They trust other patients more than they do pharma ads when it comes to prescription drug info. Forty-three percent of rare disease patients who use social media for health said they trust online patient reviews more than prescription drug ads. The way to engage these patients is not by blasting messaging and awareness campaigns at them across digital channels, but rather in building meaningful one-on-one relationships through influencers and participation in tight-knit disease forums and online communities. 

Rare disease patients are looking online -- to each other, to HCPs and healthcare companies -- for help in understanding their conditions and treatment options. At DRG Digital, we help clients identify key digital touchpoints by mapping the patient journey and the digital ecosystem surrounding their brand.


Contact us at to talk about how we can help your brand get closer to patients, HCPs and payers. 



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