PatientsLikeMe was once again a proud sponsor of the 15th Annual Parkinson’s Unity Walk, held in New York City on Saturday April 25, 2009. On a gorgeous but hot day in Central Park, Jeana Frost, James Kebinger and I (Maureen Oakes) joined thousands of walkers and sponsors in raising more than $1.2 million for Parkinson’s… Continue reading PatientsLikeMe at 2009 Parkinson’s Unity Walk
Category: Patient Experiences
Parkinson’s Disease: Real-World Data, Real-World Experiences
It’s Parkinson’s Awareness Month. As we continue to spread the word about this condition, we wanted to tell you a little bit more about our PatientsLikeMe Parkinson’s community. Launched two years ago this month, the community has steadily grown to include more than 3,400 patients. Below are some interesting facts about the community, as well… Continue reading Parkinson’s Disease: Real-World Data, Real-World Experiences
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
Sharing to Feel Better
Sharing. It’s a concept we all learn at a very young age. Oftentimes reminisced as happening in the sandbox, we think back to our young selves giving up what we hold most dear (in this case, some cheap plastic toy) to allow someone else to benefit from it. It seems so simple and obvious, but… Continue reading Sharing to Feel Better
Share On: Parkinson’s Awareness Month and PatientsLikeMe PD Community Anniversary
Did you know this April is both Parkinson’s Awareness Month and the 2-year anniversary of the PatientsLikeMe Parkinson’s community? We invite you to celebrate with us all month as we share real-world patient insights and experiences of living with this disease…and we ask you to share on! The PatientsLikeMe Parkinson’s community has come a long… Continue reading Share On: Parkinson’s Awareness Month and PatientsLikeMe PD Community Anniversary
Annoyed or Impressed By Your Therapist? PatientsLikeMe Mood Members Chime In
In a recent blog post by New York Times’ Tara Parker-Pope, PsychCentral highlights “The 12 Most Annoying Habits of Therapists.” Launched a year ago this week, our very own Mood community has more than 1,300 patients using “Individual Therapy” as a treatment for their condition. We asked them to tell us some of the habits… Continue reading Annoyed or Impressed By Your Therapist? PatientsLikeMe Mood Members Chime In
Happy 1st Anniversary Mood Community!
A year ago today, PatientsLikeMe launched our combined Mood community for patients with depression, anxiety, bipolar, obesessive-compulsive disorder and post-traumatic stress disorder. It was first announced to the world in Thomas Goetz’s article, Practicing Patients, featured in New York Times Magazine. Since then, more than 8,700 patients have joined the community, sharing detailed information about… Continue reading Happy 1st Anniversary Mood Community!
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
We Share Too! Contributing Open Source Code
“Open source software” is created and improved collaboratively, over the web, by the people who need it, even if they work for different companies in different industries on different continents. Similar to our Openness Philosophy, the premise behind open source software is that none of us is as smart as all of us. Software developers… Continue reading We Share Too! Contributing Open Source Code
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