It’s National Multiple Sclerosis (MS) Awareness Week. There are more than 17,400 patients in the PatientsLikeMe MS community sharing data about their symptoms, treatments and side effects, lifestyle modifications and overall health outcomes. In honor of the week, and March being National MS Awareness Month, we will be posting interviews with MS patients and nonprofit… Continue reading Multiple Sclerosis Awareness Week: Interview with Gardener
Category: Patient Experiences
It’s Rare Disease Day!
Interview with Gracie (Devic’s NMO Patient)
Today, we’re joining the National Organization for Rare Disorders (NORD) to help raise awareness for Rare Disease Day. In recognition of the day, we recently interviewed Gracie, a valued member of our Devic’s Neuromyelitis Optica (NMO) community. Devic’s NMO is a rare autoimmune inflammatory disorder which affects the optic nerve and spinal cord and is… Continue reading It’s Rare Disease Day!
Interview with Gracie (Devic’s NMO Patient)
Where are the Cures? An interview with Myelin Repair Foundation
PatientsLikeMe partner, Myelin Repair Foundation (MRF), is a nonprofit organization devoted to reducing the time it takes to discover and develop treatments for multiple sclerosis (MS) patients. Recently, the MRF launched a campaign called “Where are the Cures?” – a site dedicated to a greater understanding of the barriers slowing the discovery and development of… Continue reading Where are the Cures? An interview with Myelin Repair Foundation
FDA’s New Guidance on Patient-Reported Outcomes
We’re big fans of patient-reported outcomes (PROs) here at PatientsLikeMe, defined by the Food & Drug Administration (FDA) as: “A measurement based on a report that comes directly from the patient about the status of a patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else.” The self-report… Continue reading FDA’s New Guidance on Patient-Reported Outcomes
Who’s #2 in Healthcare Innovation?
You guessed it – PatientsLikeMe
It’s been an exciting few months for PatientsLikeMe. Here’s a quick recap… Today, Fast Company released its annual ranking of the 50 Most Innovative Companies in the World. PatientsLikeMe made #23 on the list alongside big league companies like Facebook, Disney, Novartis and Amazon. PatientsLikeMe was also named the second most innovative company in healthcare,… Continue reading Who’s #2 in Healthcare Innovation?
You guessed it – PatientsLikeMe
Interview with Thomas Goetz
(author of The Decision Tree)
In March 2008, a story by Thomas Goetz appeared in the New York Times magazine about PatientsLikeMe (“Practicing Patients”). Thomas has now expanded on that reporting with a new book, The Decision Tree, that explores how new tools like PatientsLikeMe can help individuals engage in their health and make better, more informed choices. We asked… Continue reading Interview with Thomas Goetz
(author of The Decision Tree)
Manage your epilepsy like a PRO
Ever wonder how epilepsy affects the patient — the whole patient? A patient-reported outcome (PRO) is a questionnaire commonly used in the clinical world to asses a patient’s quality of life (QOL) for research studies. Most of the time patients never get to see their test results, much less see them plotted over time. That’s… Continue reading Manage your epilepsy like a PRO
Video: Introducing the New Epilepsy Community
In honor of the launch of the new PatientsLikeMe Epilepsy community this week, we have created a video highlighting how patients are coming together to share their experiences with epilepsy and learn from others. It’s now available on our PatientsLikeMe Epilepsy YouTube page. This short video includes quotes from some of our members about what… Continue reading Video: Introducing the New Epilepsy Community
Exciting New ALS Progression Chart Upgrades
Today, we’re announcing an exciting major upgrade to our PatientsLikeMe platform – new profile charts with significant functional improvements. We started PatientsLikeMe with the idea that visualizing your condition and treatment history over time is a powerful way to understand the impact of your treatment choices and tell the story of your progress to other… Continue reading Exciting New ALS Progression Chart Upgrades
A Year in Review: PatientsLikeMe in 2009
As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year. Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months. Wishing you all a Happy New Year! Community MilestonesThis year, the 15+ disease communities… Continue reading A Year in Review: PatientsLikeMe in 2009