Last month, Jim, a member of the PatientsLikeMe Team of Advisors, was invited by Sally Okun, PatientsLikeMe’s VP Advocacy, Policy & Patient Safety, to present at the Drug Information Association (DIA) Pharmacovigilance Conference. He also led a lunch roundtable for drug risk/benefit communications experts. Sally, who also participated on the roundtable panel, says requests for… Continue reading Communicating drug risks/benefits so the message really gets through
Tag: conference
Getting “Patients Included” right Part II: Planning a patient-centric event
You may remember Part I of this blog that focused on the experiences of two PatientsLikeMe members who attended the Kidney Health Initiative’s (KHI) workshop, “Understanding patients’ preferences: Stimulating medical device development in kidney disease,” back in August. KHI is a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of… Continue reading Getting “Patients Included” right Part II: Planning a patient-centric event
Getting “Patients Included” right Part I: Two members attend a Kidney Health Initiative workshop
Back in August, the Kidney Health Initiative (KHI), a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN), held a workshop called “Understanding patients’ preferences: Stimulating medical device development in kidney disease.” But this was more than a workshop – it was an event centered around the idea… Continue reading Getting “Patients Included” right Part I: Two members attend a Kidney Health Initiative workshop
A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease
Back in September, Sally Okun, Vice President of Advocacy, Policy and Patient Safety, and community moderator Molly Cotter, attended the FDA public meeting on Parkinson’s disease (PD) along with PatientsLikeMe member Gary (tupelo). We posted some interesting developments from the meeting in the forum, but we also caught up with Gary for his perspective on… Continue reading A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease
H@cking Medicine: Open Up!
This weekend, MIT is hosting the first H@cking Medicine conference and PatientsLikeMe is proud to be a sponsor. The hacking encouraged here isn’t malicious, rather, it refers to a passionate subculture of computer programmers who believe in sharing, openness, and innovation (among other things). Those are three concepts near and dear to us here at… Continue reading H@cking Medicine: Open Up!
PatientsLikeMe and The Power of Peers
Over the weekend, PatientsLikeMe was an exhibitor at the Depression and Bipolar Support Alliance’s 2008 National Conference, which took place September 11-14th in Norfolk, Virginia. The theme was “The Power of Peers.” While I spent most of my time at our sponsor table answering questions about PatientsLikeMe, I overheard other attendees discussing a concept I… Continue reading PatientsLikeMe and The Power of Peers
PatientsLikeMe at the Young-Onset Parkinson’s Network Conference
PatientsLikeMe was a proud sponsor of the National Parkinson’s Foundation Young-Onset Parkinson’s Network (YOPN) Conference in Atlanta, GA last week. The event, coordinated by and for people living with Young-Onset Parkinson Disease (YOPD), was a huge success. Paul Wicks and I (Maureen Oakes) enjoyed working at the booth, meeting many of our current members and… Continue reading PatientsLikeMe at the Young-Onset Parkinson’s Network Conference
PatientsLikeMe at the Toronto ALS/MND Symposium
This year PatientsLikeMe was the major sponsor of the 18th International ALS/MND Symposium held in Toronto, Canada. Research scientist Paul Wicks, marketing officer Lori Scanlon, and community liaison Emma Willey were all in attendance to tell people about the site. We first started telling the ALS/MND community about us at the Yokohama conference in 2006,… Continue reading PatientsLikeMe at the Toronto ALS/MND Symposium