Rare diseases: an opportunity for patient engagement

Thomas Sessa thomas@datanomygroup.com
Dayna Sessa dayna@datanomygroup.com

Abstract

A rare disease is defined as a condition affecting less than 200,000 patients in the US.  There are 7000 such diseases impacting 30 million patients and families in this country alone. 

We are building a platform that will allow patients with rare diseases and their caregivers to foster micro-communities, log real time home care data and input full EHR family & personal histories.  With this we not only remove the barriers of isolation that often come with any disease, let alone a rare one, but we provide a platform for crucial data that was not previously collected in a structured way, particularly along the vertical of one disease. With that we're building a data analytics engine that highlights commonalities and perhaps some environmental & genetic causes of the disease otherwise not discovered for the purposes of treatment and acceleration of diagnosis.

We can now provide vital information to clinicians & researchers, that was not accessible until this point.  They now have access to patient behavior and symptoms in real-time, outside of the clinical environment--- making the communication between provider and patient more engaged, more empowered and more reciprocal.  

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