Empowering Rare Disease Research and Communities
At InCSD Rare, our mission is to empower rare disease communities by advancing the way data is collected, understood, and transformed into meaningful action. We partner with nonprofit organizations, families, and scientific leaders to create high-quality, regulatory-grade natural history databases and patient registries that truly reflect the lived experiences and clinical realities of rare conditions.
What We Do
Research Support
We support the development of patient registries and natural history studies that meet regulatory-grade standards, enabling their use in clinical trials and health authority submissions.
Data Management
We partner with patient organizations, caregivers, and scientific leaders to generate data that is not only rigorous, but also deeply relevant to real-world disease exeripiences.
Collaboration
We welcome collaboration with advocacy groups, rare disease nonprofits, clinicians, and researchers who want to improve data quality, disease understanding, and trial readiness.