RARE DISEASE TECHNOLOGY TRENDS –'REGISTRIES', JOIN US JUNE 22
Advancements in Technology Help Rare Disease Research Researchers for rare diseases all need somewhere to digitally store their research data, and manage it effectively, and run actual queries,...
View ArticleNature.com Reports – Rare Disease Studies Seek Online Giving
The Global Genes Fund seeks online donations for conditions such as progeria, a rare disorder that causes accelerated aging. Those wanting to raise awareness about a rare disease will be able to take...
View Article‘THE HILL’ Reports: Help children with rare diseases get the new medicines...
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...
View ArticleRare 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...
View Article‘R.A.R.E.’ BOARD OF DIRECTORS AND ADVISORS ANNOUNCED
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...
View ArticleGuest 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...
View ArticleRare 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...
View ArticleWhen Disaster Strikes, Are Your Health Records Electronic, Safe and...
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...
View ArticleBetter 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...
View ArticleRare Disease Network Connecting Patients with Experts Highlights Hospitals’...
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...
View ArticleRARE DISEASE TECHNOLOGY TRENDS –'REGISTRIES', JOIN US JUNE 22
Advancements in Technology Help Rare Disease Research Researchers for rare diseases all need somewhere to digitally store their research data, and manage it effectively, and run actual queries,...
View ArticleNature.com Reports – Rare Disease Studies Seek Online Giving
The Global Genes Fund seeks online donations for conditions such as progeria, a rare disorder that causes accelerated aging. Those wanting to raise awareness about a rare disease will be able to take...
View Article‘THE HILL’ Reports: Help children with rare diseases get the new medicines...
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...
View ArticleRare 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...
View Article‘R.A.R.E.’ BOARD OF DIRECTORS AND ADVISORS ANNOUNCED
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...
View ArticleGuest 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...
View ArticleRare 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...
View ArticleWhen Disaster Strikes, Are Your Health Records Electronic, Safe and...
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...
View ArticleBetter 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...
View ArticleRare Disease Network Connecting Patients with Experts Highlights Hospitals’...
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...
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