Despite a growing pharma focus on and investment in rare disease therapeutics, it is difficult to identify patients since they are fewer in number, heterogenous, and globally scattered. This identification problem delays clinical trial recruitment and makes Phase 4 monitoring challenging. On our platform, verified rare disease patients voluntarily provide demographic, diagnostic, and genetic data along with self-reported medication experiences (of both approved and off-label therapies). This creates a user base from which pharma companies can easily recruit for clinical trials. This vast, detailed, consented user data also provides pharma with unique and otherwise hard-to-access rare disease RWE. This RWE can be mined to support R&D, indication expansion, trial planning, and post-market surveillance. Launched in the US for Android, our app has a growing waitlist of 1000+ users and 350+ rare disease patient communities. Expansion to additional countries and operating systems is underway.
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