Rare Disease Network Connecting Patients with Experts Highlights Hospitals’ Knowledge Base


About 25 million people across the globe have a rare disease. One member of DreamIt Ventures’ healthcare startup accelerator DreamIt Health has developed an app to help connect patients with a global network of rare disease experts. SpeSo Health’s network includes physicians, clinicians and the hospitals and institutions where […]

Better Access to Patient Longitudinal Data Promises Greater Research Latitude


Patient longitudinal data which are collected over long periods of time reveal a more complete picture of many rare diseases than temporal data alone. Children suffering from rare diseases are more likely to visit multiple providers of care over long periods of time such as […]

When Disaster Strikes, Are Your Health Records Electronic, Safe and Immediately Available?


by Dr. Martin H. Orens As a board certified emergency room physician, I am passionate about helping parents see the importance of having an online medical file for their children. It’s hard enough keeping track of a child’s health records in normal circumstances. Have you […]

Rare Disease Registry Contest Underway – Deadline for Submissions is Sept 30th


The Sept. 30th CRDN/RemedyMD Video Contest Deadline is Almost Here! This summer, the CRDN announced a video contest to give away one free research software suite donated by RemedyMD valued up to $50,000. The software can integrate existing research data from any source and collect […]

Guest Blog Scientific American – Innovation in Medical Diagnositics Saves Lives


Innovation in Medical Diagnostics Saves Lives – a system that isn’t broken and doesn’t need fixing For over a century, the U.S. Food and Drug Administration (FDA) has done a laudable job of ensuring the safety and efficacy of healthcare for Americans. Recently announced potential […]



The RARE Project Announces Big Team Additions, Setting the Stage For Continued Success Thirty (30) million people in the US and 350 million people worldwide are affected by rare disease.  Rare disease affects more children and their families then AIDS and CANCER combined worldwide.  The […]

Rare Disease Research and Integrated Systems: 1+1=3


Rare Disease Research and Integrated Systems: 1+1=3 Rare disease data can be hard to come by…Really hard when there are fewer subjects to study compared to those in the general population. By their very nature, these data involve the need to be collected from more […]