Sustaining Attention in Rare Disease

Rare Disease Day is an important date in the calendar for the estimated 263–446 million people affected by rare diseases globally. Its aim is to raise awareness, boost community building, and refocus research efforts. However, when it comes to social media conversation around the Rare Disease Day date, there is an apparent divide between patient communities and the pharma industry.

Using social media listening (SML) tools, we examined the discussions around last year’s Rare Disease Day on platforms such as Facebook, Instagram, Reddit, and specialist forums. Our analysis uncovered key differences in the approaches to content from patients versus the pharma industry. Pharma focuses on their heritage in rare disease and statistics around prevalence, and overall is relatively muted compared to the number and depth of patient communities that are sharing personal challenges and experiences.

Higher quality dialogue around rare diseases between patients and pharma companies is certainly something we all need to encourage.