Law Blog - WSJ.com (Free subscription) | 07/29/2008
After Internet millionaire Jay Tenenbaum was diagnosed with melanoma, he used his Web savvy to create CollabRx, a company that helps patients and researchers work more effectively to find treatments for rare diseases. The idea taps into the recent phenomenon of patient-supported research.
Medical News Today (Free subscription) | 07/28/2008
Lawmakers on Thursday during a hearing of the Joint Economic Committee criticized pharmaceutical companies for large price increases for brand-name medications for rare diseases, CQ HealthBeat reports.
TomographyBlog.com (Free subscription) | 07/21/2008
I would like to provide yet another little space on this blog for something that is not related to either Radiology nor Nuclear Medicine, but is something that everyone should be aware of : rare diseases. They are defined as rare because only 4-5 people in 10,000 are affected by either one of them, and [...]
The Irish Times (Free subscription) | 07/17/2008
THE DEVELOPMENT of centres of excellence around Europe for the treatment of rare diseases is among the main priorities of the EU's new health commissioner, Androulla Vassiliou.
KillerStartups.com (Free subscription) | 07/10/2008
What it does There are plenty of sites out there devoted to those patients who suffer heart disease, cancer, and diabetes, but if you’re afflicted by a less common disorder, you may not be able to enjoy the same amount of web resources. However, a new site, RareShare, aims to connect patients, friends, and families affected by rare diseases. The idea behind the site is that in total, there is a relatively...
The Irish Times (Free subscription) | 07/08/2008
The lack of a support system for those with rare diseases needs to be remedied
business|bytes|genes|molecules (Free subscription) | 07/08/2008
I take a somewhat voyeuristic delight in finding out about the kinds of subjects people build social networks around. Today ReadWriteWeb points us to Rareshare, a social network for people coping with rare diseases. I actually believe that building hyperspecific communities works in driving engagement, but I have never understood how, with certain exceptions, such [...]
ReadWriteWeb (Free subscription) | 07/08/2008
Rareshare is a social network for people coping with rare diseases like adrenomyeloneuropathy or erythromelalgia. Rareshare was created by David Isserman , in cooperation with Nutra Pharma . Rareshare currently features communities for about 600 diseases and expects to expand this to about 1,000 by fall. Since the site launched about a month ago, a number of very active communities have already formed...
Red Orbit (Free subscription) | 07/06/2008
By Melissa Evans After years of clinical trials and research, Dr. Yutaka Niihara came up with a treatment for sickle cell anemia that was so simple he almost didn't believe it.
atHome Top Story (Free subscription) | 07/03/2008
Oshawa pharmacist Rajni Kassett is sending a few of his customers, struggling with relatively rare diseases, to a new website. He's telling them they just might find the help and support there they sometimes feel they're missing.
A Chronic Dose (Free subscription) | 06/25/2008
As so many of you know, fundraising, awareness, and research are critical for improving patient outcomes and quality of life. For rare diseases that don't get the face time and air time more common disease receive, this is especially true, and disease organizations are often our lifeline. So, I was pleased to get an e-mail last night informing me that GoodSearch named the PCD Foundation the "Charity...
Boston Globe (Free subscription) | 06/17/2008
A legislative committee is hearing from experts on ways the General Assembly can help families grappling with rare diseases.
Newswise (Free subscription) | 06/12/2008
Collaborative approaches are needed to ensure that diagnostic testing for families affected by the rarest genetic diseases meets the same quality standards as for more common clinical laboratory tests, according to the May special issue of Genetics in Medicine, official journal of the American College of Medical Genetics (ACMG).
Living on the frontlines (Free subscription) | 06/02/2008
I just wanted to say congradulations to Dr. Gahl! He was mentioned in Newsweek! He's taking on trying to diagnose undiagnosed diseases. I expect it will be a project that is completely overwhelming - just given my experience wandering around the world of rare diseases and encountering so many people that don't have a diagnosis. There is a comment section at the end of the story on the Newsweek site...
Medical News Today (Free subscription) | 05/21/2008
NIH on Monday announced a pilot program that will study extremely rare diseases in people and could provide some no-cost care for study participants, the AP/San Francisco Chronicle reports. The
