patientslikeme

Genetic Discrimination: The End Before the Beginning

Updated: The Genetic Information Nondiscrimination Act (GINA) was signed into law by President Bush on May 21, 2008. In a victory for openness and personalized medicine, on May 1, Congress sent President Bush a bill forbidding employers and health insurers from discriminating on the basis of genetic information. The Genetic Information Nondiscrimination Act was passed… Continue reading Genetic Discrimination: The End Before the Beginning

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

The Power of “Light Touch” Moderation

Members of PatientsLikeMe interact a number of ways: viewing profiles, reading treatment and symptom reports, and posts in our forums. In contrast to many of the most heated arguments on the internet (politics, religion, Star Trek…), the discussions on PatientsLikeMe have a tangible impact on people’s lives. Patients with a chronic condition often spend… Continue reading The Power of “Light Touch” Moderation

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

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

PatientsLikeMe Featured in New York Times Magazine

In one of the greatest honors in our young company to date, PatientsLikeMe was featured in today’s New York Times Magazine. The article, entitled Practicing Patients, appropriately discusses the pros and cons associated with sharing data-rich personal health information in an open community. PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD… Continue reading PatientsLikeMe Featured in New York Times Magazine

It’s been two years!! ALS Community Report

PatientsLikeMe was born of a passion to provide the best tools for patients to participate in their own care, share experiences and change the way medical research is done.Thanks to our members and the dedication of our growing team, our first community, ALS, has now been open to the public for two years! The community… Continue reading It’s been two years!! ALS Community Report