Every December 1st, we join hands with the HIV community at large in recognition of World AIDS Day. The theme of World AIDS Day this year is leadership — a fitting theme for the 2500+ patients who are leading the way through openness in the PatientsLikeMe HIV community. These leaders have chosen to share their… Continue reading PatientsLikeMe Facing World AIDS Day 2009
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.
PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome
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 SYNDROMEResearchers Use Open Medical Network to Measure Real-World Impact of XMRV Virus Cambridge, MA–October… Continue reading PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome
The Patient Voice – Loud and Clear
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 with the inaugural report on inpatient therapy, a topic often discussed by our Mood community members. … Continue reading The Patient Voice – Loud and Clear
New Parkinson’s Genetics Engine to Enhance Research Through Shared Data
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 and find others with the… Continue reading New Parkinson’s Genetics Engine to Enhance Research Through Shared Data
MS Patients Stepping into the Real-World
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
Charting the course of PLS and PMA
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 are different because PLS only… Continue reading Charting the course of PLS and PMA
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
An Interview with UCB’s Peter Verdru
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 community, adverse event reporting, and… Continue reading An Interview with UCB’s Peter Verdru
FALS Patients Like You: An Interview with Samperio
Today, more than 3,600 people with ALS are sharing their health data and experiences with patients like them. Recently, we announced our new genetic search engine for ALS patients, designed to help members find others like them, right down to the molecular level. With 10% of all newly diagnosed ALS patients joining PatientsLikeMe, there are… Continue reading FALS Patients Like You: An Interview with Samperio
It’s National HIV Testing Day
Today – June 27, 2009 – is National HIV Testing Day. AIDS.gov, the one-stop access to U.S. Government HIV/AIDS information and an organization PatientsLikeMe collaborates with to raise awareness of HIV, has been running a campaign all month to promote National HIV Testing Day. As part of the campaign, AIDS.gov launched the “I Know. I… Continue reading It’s National HIV Testing Day