Leveraging Patient Insights for Deeper Engagement in the Rare Disease Space

In our new feature, “Bionews Insights,” we chat with thought leaders at Bionews. This month, we talked to Marcella Debidda, president of Bionews Clinical and Insights, about the power of patient-driven data and how Bionews is harnessing it to create impactful connections and solutions for the rare disease community.

Bionews recently conducted the largest-ever U.S. survey of its kind. The Bionews Rare Disease Survey 2024 included more than 5,000 patients and caregivers sharing their experiences.

First, we are taking a look at how participants responded to questions about daily life (e.g., daily activities, social life, and mental well-being) and how they manage the realities of living with a rare disease. Here are eight key takeaways.