Four years ago this Spring, PatientsLikeMe launched the ALS community with very specific goals in mind – to help patients like you take control of your disease, share and learn from one another, have a voice in real-world research and inform the companies that make your drugs and can improve your care. Together, we have… Continue reading ALS Awareness 2010: A Four Year Journey With Our PALS
Category: Patient Experiences
Transparency, Openness and Privacy
The following message was sent this morning to all members of PatientsLikeMe. Please read what we have to say about openness, sharing and its privacy implications and join the conversation. **** Dear PatientsLikeMe Members, What are the privacy implications of sharing in this open, online community? We talk a lot about this and, as a… Continue reading Transparency, Openness and Privacy
ALS Awareness Month: ALS Patients Are “In Motion”
Did you know there are more than 4,500 patients in the PatientsLikeMe ALS community sharing and learning from each other every day? Outside of our community, patients are also teaming up to raise awareness and money for ALS research. Here is a highlights video of ALS members who have participated in our PatientsLikeMeInMotionTM program, stepping… Continue reading ALS Awareness Month: ALS Patients Are “In Motion”
An Interview with DannyD to Kick-Off ALS Awareness Month
It’s ALS Awareness Month! Did you know there are more than 4,500 patients with ALS (PALS) in PatientsLikeMe’s flagship community? We’ll be updating you all month on what is being learned by and from our PALS, so stay tuned. To kick us off, here is an interview with one of our long-time, three-star members –… Continue reading An Interview with DannyD to Kick-Off ALS Awareness Month
Tell the World: Parkinson’s Patients Unite Online and Off
At PatientsLikeMe, thousands of patients are uniting online to share health data, find patients like them, and to learn from one another. Since this is Parkinson’s Awareness Month, we wanted to highlight an off-line event that also represents unity – aptly named the Unity Walk. The annual event, which takes place next weekend in New… Continue reading Tell the World: Parkinson’s Patients Unite Online and Off
“We Keep Moving” with the National MS Society of Greater New England
Just on the heels of MS Awareness Month, here’s one more interview with one of PatientsLikeMe’s nonprofit partners. For this interview, Molly Cotter, who handles Nonprofit Partnership Development at PatientsLikeMe, sits down with National MS Society of Greater New England’s Development Director Todd Krohne to discuss exciting things happening with his chapter, including their new… Continue reading “We Keep Moving” with the National MS Society of Greater New England
2010 Parkinson’s Awareness Month: Interview with EnglishTutor
What better way to kick-off 2010 Parkinson’s Awareness Month than to bring you “the patient voice.” At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we interview patients each month in our newsletter to find out more about how they approach life. We recently featured englishtutor, a… Continue reading 2010 Parkinson’s Awareness Month: Interview with EnglishTutor
PatientsLikeMe – Out & About and OnCall
The PatientsLikeMe team has been traveling around the globe recently talking about the power of real-world patient data in changing healthcare. You may have heard about our executives at industry conferences, government hearings, or even on TV. Highlights below. Last month, PatientsLikeMe Co-founder and President Ben Heywood was on Fox Business News talking about how… Continue reading PatientsLikeMe – Out & About and OnCall
Celebrating MS Awareness Month: Interview with Accelerated Cure’s Sara Loud
It’s MS Awareness Month and we’re excited to bring you information from our nonprofit partner, Accelerated Cure Project for MS. We briefly mentioned the Accelerated Cure Repository in our blog interview with Devic’s patient, Gracie. We thought we’d take the opportunity to ask The Accelerated Cure Project for MS a bit more about the repository… Continue reading Celebrating MS Awareness Month: Interview with Accelerated Cure’s Sara Loud
Capture and Share Your Transplant Journey
Following up on last week’s launch of the PatientsLikeMe Transplants Community, we present you with the next in our podcast series – PatientsLikeMe OnCallTM: Transplant Community Walk-Through. Podcast host, Aaron Fleishman, interviews Product Manager Maureen Oakes about new and upgraded functionality rolled out with the launch of this transplants community. Topics covered in this podcast… Continue reading Capture and Share Your Transplant Journey