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

Learning Your Personal Genetics: An Interview with PGen Study Participant PF Anderson

Recently, PatientsLikeMe sent a message to our members about an opportunity to participate in the Impact of Personal Genomics (PGen) Study, led by researchers at Harvard and the University of Michigan.  Each of the 1,000 study participants receives personal genomic testing services at a significantly subsidized discount.  Using a series of surveys, the investigators will… Continue reading Learning Your Personal Genetics: An Interview with PGen Study Participant PF Anderson

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.

Quote of the Day: Jamie Heywood

“People often think of PatientsLikeMe as a social network, and I think what they miss is the fundamental part of our invention. What we’re really building is the first medical record designed to answer questions directly for patients. Not to do billing, not to do some other component of the healthcare system. To actually answer questions for patients. Paul Wicks,… Continue reading Quote of the Day: Jamie Heywood

A Peek at the June Newsletter for Members

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our June edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to… Continue reading A Peek at the June Newsletter for Members

A Day in the Life of PatientsLikeMe Product Manager Maureen Oakes

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments.  So far, we’ve interviewed User Experience Engineer Cris Necochea, Research Assistant Shivani Bhargava, Office Manager Alison Dutton,  Research Scientist Timothy Vaughan and Biz Dev’er Arianne Graham.  Today… Continue reading A Day in the Life of PatientsLikeMe Product Manager Maureen Oakes

Today’s Photo: Raising Epilepsy Awareness on the National Mall

Summer is here, and that means there are disease-related walk/run events happening all around the country! For inspiration, please meet epilepsy patient Monica (second from right), who led a PatientsLikeMeInMotion-sponsored team at the National Walk for Epilepsy in Washington, DC.  Held on March 31, 2012, the two-mile walk occurred between Madison and Jefferson Drives on… Continue reading Today’s Photo: Raising Epilepsy Awareness on the National Mall