More than 10,000 rare diseases affect over 30 million Americans, with nearly 70% appearing in childhood. Families often face long, challenging diagnostic journeys—navigating multiple specialists and fragmented medical records. Yet, only 5% of roughly 7,000 rare diseases have FDA-approved treatments.

A recent study projects about 45 new pediatric rare disease therapies by 2033, but 95% of these diseases remain without treatment. 

This gap exists due to scarce clinical trial data, small patient populations, lack of standardized diagnosis codes, and high R&D costs. Rare disease patient data is scattered across real-world data, EHRs, claims, and labs—each using inconsistent coding and terminology.

By linking structured and unstructured data, we can create comprehensive patient timelines, uncover critical patterns, and accelerate diagnosis and treatment.

At Clinakos Inc., we unlock hidden patient insights by combining hard-to-find unstructured data with structured data across the healthcare ecosystem through:

✨ Integrated Patient Data™
🔗 Aggregates data from EHRs, pharmacies, labs, payers, and social determinants (>90% coverage)
📈 Delivers a comprehensive, longitudinal, near real-time patient view

🤖 Medically Smart AI™
🧠 Uses NLP and machine learning to uncover hidden patient subpopulations
💡 Provides actionable insights for patient identification and matching

👥 Patient360 Profiles
🔬 Combine quantitative and qualitative data for a holistic patient view
🎯 Reveal disease patterns and improve outcomes

We’re committed to bridging the pediatric rare disease therapy gap by delivering high-fidelity, robust data that identifies unmet needs, finds eligible pediatric patients faster, and tracks patient journeys in real time. 

Because every child with a rare disease deserves timely diagnoses, thoughtful care plans, and access to effective therapies. ❤️

Interested in seeing our rare disease-specific capabilities in action? 

👉Reach out to us at [https://lnkd.in/gp3gUmXc]

👉 To know more about us, follow us at Clinakos Inc.

Click this link to the study 🔗https://www.jmcp.org/doi/10.18553/jmcp.2025.31.5.491