“The benefit of sharing on PatientsLikeMe is the support. For me, it doesn’t matter what I’m going through, there are people there that understand. They’re not judgmental. They get it. They’re there too. I get lots of emotional moral support.” – Multiple Sclerosis Patient Marcia Back in June, we shared with you a video interview… Continue reading Marcia Hirst: Don’t Let Multiple Sclerosis Take the Joy Out of Your Life
Category: Patient Experiences
Join Us Next Week at the Bubbly Bub & Grub
Are you a Boston-area Ruby programmer or Ruby on Rails developer? An open source software enthusiast? Or someone who just likes to hang out with the techie folks? PatientsLikeMe is a proud sponsor of the Boston Ruby Group’s upcoming social event, the cheekily named Bubbly Bub & Grub at a Pub in the Hub Club, which takes… Continue reading Join Us Next Week at the Bubbly Bub & Grub
PatientsLikeMe in the News: A Roundup
Check out some of the media outlets that have highlighted health social networks recently – including PatientsLikeMe and our members. Social Media a Godsend for Patients with Rare Diseases PatientsLikeMe is highlighted as a good example in this Chicago Tribune article. Medical Innovation Needs Silicon Valley Speed, Stat Fast Company cites us for providing “unprecedented… Continue reading PatientsLikeMe in the News: A Roundup
Bridging Traditional Medicine and Online Health
“The reason I’m interested in Doctors 2.0 is that it’s the intersection between those traditional healthcare establishments and the new cutting edge of the Internet, and I think the people who can bridge those two areas over the next two to three years will be the ones who will be able to empower patients and… Continue reading Bridging Traditional Medicine and Online Health
Navigating Healthcare on Twitter
More than five years after founder Jack Dorsey sent the very first “Tweet,” Twitter has exploded into a social media behemoth. Today, billions of real-time Tweets are sent each year about all manner of subjects – including healthcare. But how in the world do you keep up with all of them? That’s exactly the conundrum… Continue reading Navigating Healthcare on Twitter
The Importance of Open Access: An Interview with Patient Advocate Graham Steel
A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe. Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific… Continue reading The Importance of Open Access: An Interview with Patient Advocate Graham Steel
Today’s Photo: Walking Warriors for MS
As we get deeper into summer, there are disease-related walk/run events happening almost every weekend. What they all share is an opportunity for patients, friends and family to come together in solidarity and raise money for research and patient services. For inspiration, please meet multiple sclerosis (MS) patient barneyhouse and her “Walking Warriors,” who took… Continue reading Today’s Photo: Walking Warriors for MS
What We’re Reading at PatientsLikeMe
Here are some of the media items that grabbed our attention recently. What Air Traffic Can Teach Us About Kidney Transplants Air traffic rules balance fairness and efficiency. Can organ waitlists do the same? Open Access Is Not for Scientists. It’s for Patients. A guest blog post by our R&D Director, Paul Wicks, for the… Continue reading What We’re Reading at PatientsLikeMe
PatientsLikeMe Adds Three New Executives to Its Leadership Team
New Appointments Cap Active Year, Solidify Team for Strategic Growth CAMBRIDGE, Mass. — Jun 27, 2012 — PatientsLikeMe, the leading health data-sharing website, announces the appointment of three new executives to its leadership team. The company, which recently expanded its website to invite patients with any disease, makes this move to focus on expanding the collection and use… Continue reading PatientsLikeMe Adds Three New Executives to Its Leadership Team
Take an HIV Test. Take Control.
“CDC estimates that 55 percent of adults – and 28 percent of adults with a risk factor for HIV – have not been tested. Too many people living with HIV are being tested and diagnosed too late to take advantage of effective HIV treatment and prevention options.” – Dr. Kevin A. Fenton, Director, CDC’s National… Continue reading Take an HIV Test. Take Control.