Redefining Rare Disease Care in the Digital Age: Insights and Key Takeaways from a Digital Health Symposium Focused on Empowering Rare Disease Communities.

Abstract

At the Stanford-UCB Rare Disease Digital Health Symposium held in Stanford, California, on September 8, 2023, researchers, clinicians, payers, thought leaders, and rare disease caregivers and advocates discussed the current state of care delivery and future perspectives of digitally-enabled care for rare disease patient populations. Digital health aims to improve healthcare delivery through novel ways of providing access to more precise diagnosis, monitoring of disease progression, treatment, prognosis, and care management for rare disease patients. The meeting focused on highlighting challenges and unmet needs, data infrastructure and analytics, the need for targeted and effective personalized therapies, and the importance of digital care transformation. The meeting also covered the social and ethical impact of access to digitally delivered, patient-centered care, as well as views on implementation and patient autonomy and empowerment.