The media is abuzz at the moment with stories about social networks like Facebook and Twitter, carrying pieces on the good (Facebook Fan Page raises $10,000 for a Silicon Valley Food Bank), the bad (Facebook users are leaving out of mistrust and boredom), and the controversial (Social networking site for living organ donors). In the… Continue reading Harnessing “New Media” for Patient Advocacy
Category: Patient Experiences
Charting the course of PLS and PMA
Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA) are two rare variants of the disease ALS. Normally, ALS affects the upper motor neurons in the brain and spinal cord, as well as the lower motor neurons that send signals from the spinal cord directly to muscles. PLS and PMA are different because PLS only… Continue reading Charting the course of PLS and PMA
It’s National HIV Testing Day
Today – June 27, 2009 – is National HIV Testing Day. AIDS.gov, the one-stop access to U.S. Government HIV/AIDS information and an organization PatientsLikeMe collaborates with to raise awareness of HIV, has been running a campaign all month to promote National HIV Testing Day. As part of the campaign, AIDS.gov launched the “I Know. I… Continue reading It’s National HIV Testing Day
Patients like me declare our health data rights
“We the people…have the right to our own health data.” That’s part of a collective new Declaration of Health Rights, officially unveiled tonight on the newly launched HealthDataRights.org. It is time to turn the conversation from fear and privacy to sharing data and finding new treatments and better care. The Declaration represents reality that what… Continue reading Patients like me declare our health data rights
PatientsLikeMe on Fox Business Live
Ben Heywood is speaking at The National Summit in Detroit today, and was invited on Fox Business Live to talk about the patient influence on the future of health care. Here is the segment with anchor Alexis Glick.
UCB and PatientsLikeMe Partner to Give People With Epilepsy a Voice in Advancing Research
Today is an exciting day for PatientsLikeMe. In a first-of-its-kind industry-patient partnership, PatientsLikeMe is joining forces with biopharma company, UCB, to launch a new community for people with epilepsy to capture real-world experiences of the disease and help advance research. The news release announcing the partnership is below. ****** BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire –… Continue reading UCB and PatientsLikeMe Partner to Give People With Epilepsy a Voice in Advancing Research
Sharing Is A Right As Well
We do not live our lives alone. We live our lives in collaboration with others. We communicate our needs and our goals, and together we work to achieve them. This is exceptionally true for families and individuals dealing with illness. Whether you’re dealing with depression, or pain, or perhaps the fear and stigma of HIV,… Continue reading Sharing Is A Right As Well
PatientsLikeMe Teams Up with 23andMe to Help Parkinson’s Patients
Despite some recent happenings in the news, we’re here to assure you that health 2.0 is still very much alive. Here’s our recent announcement about our new partnership with 23andMe. ————– PatientsLikeMe, the first community-based personalized medicine platform for people with life-changing conditions, and 23andMe, the world’s leading personal genomics company, announce a partnership today… Continue reading PatientsLikeMe Teams Up with 23andMe to Help Parkinson’s Patients
The Patient Voice: Interview with Mountabora (Mood Conditions Community)
Yesterday, we announced a new report called The Patient Voice for Inpatient Therapy, which highlights patients’ top tips for having a positive inpatient therapy experience. Maureen Oakes, community manager for PatientsLikeMe Mood Conditions Community (for people with depression and other mood conditions), recently interviewed 3-star member, Mountabora, about her experiences with hospitalization. Here’s what she… Continue reading The Patient Voice: Interview with Mountabora (Mood Conditions Community)
Introducing “The Patient Voice” – First up? Inpatient Therapy
Today’s patient has a loud and strong voice. At PatientsLikeMe, we hear you. You’re saying, “I know this disease, I know how it acts in the real-world, and it’s time to share that with others.” With thousands of patients sharing data and experiences every day on our site, we’ve decided to launch a report that… Continue reading Introducing “The Patient Voice” – First up? Inpatient Therapy