In a recent series on patient choices, we’ve highlighted a lot of the decisions patients like you have to make on a daily basis. A few weeks ago, David S. Williams kicked off the series with a blog about the treatment and career decisions that patients like you, and his mother, have made. Kate Brigham… Continue reading Patient Choices: The Deciding Factors
Tag: community
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
Announcing the PatientsLikeMe ALS Genetics Search Engine
This month marks the 3-year anniversary of our flagship ALS community. While there have been so many exciting milestones we’ve reached in that time, we’re always looking at ways to bring new insight to this disease. Today, we’re announcing the launch of our Genetics Search Engine for people with ALS. Imagine finding other patients just… Continue reading Announcing the PatientsLikeMe ALS Genetics Search Engine
A new gene for ALS: What sharing your genetics could mean for research
In today’s issue of the journal Science two papers describe the discovery of a new gene for ALS (you can read the abstracts here and here). Around 90% of ALS cases are sporadic, i.e. we don’t know what causes them, but for 5-10% of patients the disease runs in their family (known as familial ALS,… Continue reading A new gene for ALS: What sharing your genetics could mean for research
ALS Symposium 2008: New features for ALS patients
This blog post is the second in a series from our attendance at the 19th International Symposium on ALS/MND in Birmingham UK in November 2008. When PatientsLikeMe attended the previous ALS/MND Symposium in Toronto Canada in December 2007, I was given a platform presentation to show the assembled clinicians, scientists and researchers what we had… Continue reading ALS Symposium 2008: New features for ALS patients
ALS Symposium 2008: A history of ALS online
Back in November, Jamie Heywood and I attended the 19th International ALS/MND Symposium in Birmingham, UK. As part of an ongoing series of blog posts reporting from that conference, I have put together a narrated slideshow which is an abridged version of a platform presentation I was asked to give at the conference about the… Continue reading ALS Symposium 2008: A history of ALS online
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…
Living Positive with PatientsLikeMe (AIDS Walk Chicago)
You’ve spotted us again! This weekend, PatientsLikeMe was a proud sponsor of the AIDS Walk/Run at Grant Park in Chicago on September 20, 2008. The event, benefiting the AIDS Foundation of Chicago and 70 other local organizations, brought together more than 7,000 people on this warm, sunny day to show their support in the fight… Continue reading Living Positive with PatientsLikeMe (AIDS Walk Chicago)
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
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