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
Category: ALS
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
Structuring and Presenting the Patients’ Perspective at AMIA
PatientsLikeMe members share health data on the site adding their own individual-level health experience to a repository of structured outcome data. The result? An unprecedented data set that informs medical conversation not only within the patient community but also with the larger scientific one. Earlier this fall, the venue for this conversation was the annual… Continue reading Structuring and Presenting the Patients’ Perspective at AMIA
CBS Evening News, BusinessWeek, Fibromyalgia: Oh, Just Your Typical Friday
It’s exciting times for PatientsLikeMe! Today, our new community for people with fibromyalgia goes live on our site. Spread the word! Let’s bring a new level of understanding to this disease in a way that nobody else can. Next week: a blog series regarding this new community and the people in it. If you haven’t… Continue reading CBS Evening News, BusinessWeek, Fibromyalgia: Oh, Just Your Typical Friday
National Family History Day
PatientsLikeMe believes in the benefits of openly sharing health information. That is why we are happy to spread the word about National Family History Day, which had its fifth anniversary on Thanksgiving 2008. As families gather this holiday weekend, National Family History Day encourages families to become familiar with the health history of previous generations. … Continue reading National Family History Day
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
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
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
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… Continue reading PatientsLikeMe Corporate Update: Q1 2008