http://blog.patientslikeme.com PatientsLikeMe - Patients helping patients live better every day Wed, 18 Nov 2009 19:48:44 +0000 http://backend.userland.com/rss092 en Every so often, we sit down to try and make our business objectives clearer to our patient communities.  Why?  Well, we can't have a business without you and our communities can't exist to help patients without a business. This often results in our Privacy Policy and User Agreement being updated to ... http://blog.patientslikeme.com/2009/11/18/sharing-opennessand-privacy/ One thing that's great about working at PatientsLikeMe is that our members are really invested in making our product better. Every day, we receive lots of great recommendations about how to improve the site.   Today, we're unveiling newly redesigned treatment reports that incorporate feedback we've received in all our communities.  ... http://blog.patientslikeme.com/2009/11/09/redesigned-treatment-reports-on-patientslikeme/ Earlier this Fall at Medicine 2.0, PatientsLikeMe was honored to receive the inaugural Journal of Medical Internet Research (JMIR) Award for our paper on what we can learn about drugs post market from patients reporting treatment experiences on PatientsLikeMe. Once a drug is on the market, it can be difficult to ... http://blog.patientslikeme.com/2009/11/05/research-award-patients-informing-practice/ PatientsLikeMe made the following announcement last night at the TEDMED conference.  For more on Jamie Heywood's presentation, check out what people are saying on Twitter. - - - - - - - PATIENTSLIKEME ADDS ONLINE COMMUNITY FOR PEOPLE WITH CHRONIC FATIGUE SYNDROME Researchers Use Open Medical Network to Measure Real-World Impact of XMRV ... http://blog.patientslikeme.com/2009/10/30/patientslikeme-adds-online-community-for-people-with-chronic-fatigue-syndrome/ Check out the October issue of WIRED magazine!  PatientsLikeMe makes "The Smart List:  12 Shocking Ideas That Will Change the World."  In an interview with Brendan Koerner ("Forget Medical Privacy"), Co-founder Jamie Heywood talks about how "the lack of openness [in medicine] is making us sicker" and how sharing individual ... http://blog.patientslikeme.com/2009/09/24/the-smart-list-forget-medical-privacy-and-the-future-of-healthcare/ The media is abuzz at the moment with stories about social networks like Facebook and Twitter, carrying pieces on the good (Facebook Fan Page raises $10,000 for a Silicon Valley Food Bank), the bad (Facebook users are leaving out of mistrust and boredom), and the controversial (Social networking site for ... http://blog.patientslikeme.com/2009/09/18/harnessing-new-media-for-patient-advocacy/ We are excited to present the first member video for the PatientsLikeMe Mood community and what better way to kick it off than with one that represents the voice of the patient. In June, we launched The Patient Voice report series with the inaugural report on inpatient therapy, a topic often ... http://blog.patientslikeme.com/2009/09/01/the-patient-voice-loud-and-clear/ Though documented as long ago as the early 1800s, medical breakthroughs in Parkinson’s disease research have been slow in coming.  That’s why PatientsLikeMe continues to get involved in the research process.  With our new genetics engine for Parkinson’s disease, patients now have a way to share information about their genetics ... http://blog.patientslikeme.com/2009/08/20/new-parkinson%e2%80%99s-genetics-engine-to-enhance-research-through-shared-data/ With 13,000+ members, the Multiple Sclerosis (MS) community is currently the largest community at PatientsLikeMe. Many of our members are just as active online as they are off. There are a countless number of ways for people to get involved in supporting research for the disease, and many patients choose ... http://blog.patientslikeme.com/2009/08/13/ms-patients-stepping-into-the-real-world/ Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA) are two rare variants of the disease ALS. Normally, ALS affects the upper motor neurons in the brain and spinal cord, as well as the lower motor neurons that send signals from the spinal cord directly to muscles. PLS and PMA ... http://blog.patientslikeme.com/2009/08/11/charting-the-course-of-pls-and-pma/ There are rare diseases, and there are rare diseases. Here at PatientsLikeMe our first community was built for patients with ALS (estimated US Prevalence: 30,000), and in common with our other neurological communities there is a familiar list of challenges: low public awareness, little funding for research, and a lack ... http://blog.patientslikeme.com/2009/07/17/rare-diseases-well-done-online/ Last month, PatientsLikeMe announced our partnership with biopharma leader, UCB, to launch a new community for people with epilepsy.  Below is an interview with UCB's Vice President of Clinical Research, Peter Verdru, MD.  David S. Williams III, head of PatientsLikeMe business development, recently spoke with Peter about the forthcoming epilepsy ... http://blog.patientslikeme.com/2009/07/13/an-interview-with-ucbs-peter-verdru/