Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions
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 [...]
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 [...]
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 [...]
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 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 [...]
Having a seriously ill child is always difficult and painful. It’s even more so when a child’s illness is one of the 7,000 rare diseases for which cures and treatments are hard to find. Rare diseases affect more than 15 million children in the United [...]
