Over the weekend, PatientsLikeMe was an exhibitor at the Depression and Bipolar Support Alliance’s 2008 National Conference, which took place September 11-14th in Norfolk, Virginia. The theme was “The Power of Peers.” While I spent most of my time at our sponsor table answering questions about PatientsLikeMe, I overheard other attendees discussing a concept I… Continue reading PatientsLikeMe and The Power of Peers
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
More Than Meets the Eye: Non-motor Symptoms in Young-onset Parkinson’s Disease
Most people think of Parkinson’s disease (PD) as a condition of aging, and most of the time they’re right. Looking at the population as a whole, about 1-2% of people over the age of 65 have PD, and it’s usually a condition that is most severe in patients in their 70’s and 80’s. However, about… Continue reading More Than Meets the Eye: Non-motor Symptoms in Young-onset Parkinson’s Disease
PatientsLikeMe at the Young-Onset Parkinson’s Network Conference
PatientsLikeMe was a proud sponsor of the National Parkinson’s Foundation Young-Onset Parkinson’s Network (YOPN) Conference in Atlanta, GA last week. The event, coordinated by and for people living with Young-Onset Parkinson Disease (YOPD), was a huge success. Paul Wicks and I (Maureen Oakes) enjoyed working at the booth, meeting many of our current members and… Continue reading PatientsLikeMe at the Young-Onset Parkinson’s Network Conference
Tysabri and the 2 New Reported Cases of PML
Members of our Multiple Sclerosis (MS) community have been discussing this story in the Boston Globe which reports severe adverse events experienced by two European MS patients on the drug Tysabri (Natalizumab). Tysabri is a monoclonal antibody which seems to have a potent effect on MS; the original trial published in the New England Journal… Continue reading Tysabri and the 2 New Reported Cases of PML
PatientsLikeMe Announces New Partnerships
At PatientsLikeMe, our Core Values drive all of our business processes including selection of partners. We are proud to announce our three newest partnerships which include both nonprofit and academic institutions. Note: At all times, our members can access information about what we do with their data, how we make money, and who is partnering… Continue reading PatientsLikeMe Announces New Partnerships
PatientsLikeMe Facebook Page
Are you on Facebook? We are! Simply search for “PatientsLikeMe” to find our new company page. Once there, click “Become A Fan,” and a “My Pages” link will be added to your profile. Remember, Facebook is an open platform that anyone can view and isn’t part of PatientsLikeMe. Therefore, any information you share about you… Continue reading PatientsLikeMe Facebook Page
Let’s make clinical trials more rewarding for patients
I came across this Wall Street Journal article earlier this week which details how patients with life-changing illnesses are using online services such as EmergingMed to help them enroll in clinical trials. The article points out that only 3% of adult cancer patients participate in trials, citing lack of awareness as a crucial factor. They… Continue reading Let’s make clinical trials more rewarding for patients
PatientsLikeMe at the Parkinson’s Unity Walk
PatientsLikeMe was a proud sponsor of the 14th Annual Parkinson’s Unity Walk in New York City this past Saturday (April 26, 2008). Jeff Cole, Kate Brigham, Maureen Oakes and I (Lori Scanlon) were all onsite working at our sponsored booth. The event, which raised more than $1.3 million in donations this year, brought together thousands… Continue reading PatientsLikeMe at the Parkinson’s Unity Walk
ALS Patients: Give us the truth about cognitive change
One of the things we’re most proud of at PatientsLikeMe is our ability to rapidly carry out research. There are some obvious benefits online: patients can can take part whenever they want, take as much time as they need (often using assistive technology), and are more likely to be open and honest about subjects that… Continue reading ALS Patients: Give us the truth about cognitive change
HIV: The Story is Far From Over
Recently, PatientsLikeMe opened a community for people affected by HIV, our first outside the area of neurological diseases. Since then, we’ve gained some 700 patients in the community, including a member who goes by the name of “BrightonBear.” His experiences are quite unique as he’s been living with HIV for more than 25 years and… Continue reading HIV: The Story is Far From Over