METHODS A representative sample of 14 rare and orphan disease companies were identified and selected based on revenues and digital presence. Secondary research was leveraged to assess companies along 15 pre-determined digital engagement and maturity criteria. Digital activities were considered across patient engagement, patient finding, physician engagement, disease awareness, and social platform presence. Emerging trends in patient finding were also identified.

RESULTS Social media has become a critical component of both digital engagement and patient finding strategies across the majority of companies. Innovation across engagement is focused on unique methods of communication (chatbots, mobile apps). There is continued focus on education and disease awareness, with new modalities emerging in AI/VR. Patient finding strategies are evolving through the use of AI and advanced data and analytics algorithms.

CONCLUSIONS Investment in digital engagement is critical for rare disease companies to deliver targeted customer engagement and patient finding. As the technology continues to evolve, companies will need to increasingly invest in digital capabilities, operational platforms, and data infrastructure to meet increasingly demanding customer expectations. Additionally, establishing platforms that manage the data and advanced analytics derived from digital engagement will drive insights and accelerate patient finding capabilities across the industry.