Check out the October issue of WIRED magazine! PatientsLikeMe makes “The Smart List: 12 Shocking Ideas That Will Change the World.” In an interview with Brendan Koerner (“Forget Medical Privacy“), Co-founder Jamie Heywood talks about how “the lack of openness [in medicine] is making us sicker” and how sharing individual health data can benefit you. … Continue reading The Smart List (Forget Medical Privacy) and The Future of Healthcare
Tag: PatientsLikeMe
Harnessing “New Media” for Patient Advocacy
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
The Patient Voice – Loud and Clear
We are excited to present the first member video for the PatientsLikeMe Mood community and what better way to kick it off than with one that represents the voice of the patient. In June, we launched The Patient Voice with the inaugural report on inpatient therapy, a topic often discussed by our Mood community members. … Continue reading The Patient Voice – Loud and Clear
MS Patients Stepping into the Real-World
With 13,000+ members, the Multiple Sclerosis (MS) community is currently the largest community at PatientsLikeMe. Many of our members are just as active online as they are off. There are a countless number of ways for people to get involved in supporting research for the disease, and many patients choose to participate in the thousands… Continue reading MS Patients Stepping into the Real-World
Rare Diseases: Well-Done Online
There are rare diseases, and there are rare diseases. Here at PatientsLikeMe our first community was built for patients with ALS (estimated US Prevalence: 30,000), and in common with our other neurological communities there is a familiar list of challenges: low public awareness, little funding for research, and a lack of adequate treatments. However, over… Continue reading Rare Diseases: Well-Done Online
FALS Patients Like You: An Interview with Samperio
Today, more than 3,600 people with ALS are sharing their health data and experiences with patients like them. Recently, we announced our new genetic search engine for ALS patients, designed to help members find others like them, right down to the molecular level. With 10% of all newly diagnosed ALS patients joining PatientsLikeMe, there are… Continue reading FALS Patients Like You: An Interview with Samperio
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
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