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 to participate in the thousands… Continue reading MS Patients Stepping into the Real-World
Tag: multiple sclerosis
Rare Diseases: Well-Done Online
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 of adequate treatments. However, over… Continue reading Rare Diseases: Well-Done Online
Sharing Is A Right As Well
We do not live our lives alone. We live our lives in collaboration with others. We communicate our needs and our goals, and together we work to achieve them. This is exceptionally true for families and individuals dealing with illness. Whether you’re dealing with depression, or pain, or perhaps the fear and stigma of HIV,… Continue reading Sharing Is A Right As Well
PatientsLikeMe Offers Adverse Event Reporting for MS Patients
PatientsLikeMe is proud to announce a pilot program in our multiple sclerosis community which helps patients submit treatment-related adverse events directly to the The U.S. Food and Drug Administration (FDA) through our site. “Adverse events” are severe side effects or events that occur as a result of using a medication, medical product or device. Understanding… Continue reading PatientsLikeMe Offers Adverse Event Reporting for MS Patients
10,000 MS Patients and Going Strong…
Today, the PatientsLikeMe Multiple Sclerosis (MS) community welcomed its 10,000th patient member! As we end 2008, more than 10,000 patients in our community are coming together to share their life experiences on PatientsLikeMe. How much experience is that? Try more than 32,000 YEARS of collective experience with MS. More members than ever are sharing in-depth… Continue reading 10,000 MS Patients and Going Strong…
PatientsLikeMe sponsors MS Challenge Walk on Cape Cod
PatientsLikeMe was recently one of the sponsors for the 2008 MS Challenge Walk on Cape Cod, a three-day, 50-mile event held on September 5-7, 2008. More than 620 walkers participated, each raising a minimum of $1,500. Overall the event raised close to $1.4 million to benefit Multiple Sclerosis (MS) education, support, advocacy and research. The… Continue reading PatientsLikeMe sponsors MS Challenge Walk on Cape Cod
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 Corporate Update: Q1 2008
This month marks the two-year anniversary of our flagship ALS community. It’s amazing to reflect on what we’ve achieved in just two short years. Not only did we build the world’s largest treatment and outcome sharing communities for ALS (1,800+ patients), MS (4,500+ patients) and Parkinson’s (1,300+ patients), but this year we began evolving into… Continue reading PatientsLikeMe Corporate Update: Q1 2008
The growth of social media in health care
According to a December 2007 iCrossing survey cited by Jane Sarasohn-Kahn in her Health Populi blog “34% of Americans turn to social media for health research.” Jane points to PatientsLikeMe and others as “proof of the reality of social media in health is alive and well and healing”, and observes that “increasing numbers of people… Continue reading The growth of social media in health care
Patients showcase PatientsLikeMe to their local support group
Our members are very enthusiastic about the value generated by sharing their information. So much so that recently two of our members decided to don their hard-earned PatientsLikeMe t-shirts and share their experiences using PatientsLikeMe with their local MS support group. They recruited several new members at the meeting and gave more information about PatientsLikeMe… Continue reading Patients showcase PatientsLikeMe to their local support group