Partnering with patients is at the very core of what we do, but a new collaboration with longtime ALS member Steve Saling (SmoothS) is giving that a new spin — it was Steve’s idea and he’s been driving the project from day one. Since his diagnosis in 2006, Steve has made it his mission to… Continue reading Paul Wicks weighs in on a new, patient-conceived project
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Steve Saling’s patient-conceived ALS project
Steve Saling (SmoothS), a longtime ALS member of PatientsLikeMe, has made it his mission since diagnosis to help other pALS live a better quality of life. He’s founded the ALS Residence Initiative, which has grown from the first fully-automated, vent-ready ALS Residence in Chelsea, Mass., at the Leonard Florence Center for Living, to multiple residences across the… Continue reading Steve Saling’s patient-conceived ALS project
The Magic Pill: A new 21-day podcast challenge
Exercise — do you think of it as a chore, or love the feeling? Our partners over at WBUR are launching a new podcast to inspire people to move more by changing the way we think about it. “A daily dose of get-up-and-go” is the mantra of the The Magic Pill, a 21-day challenge that kicks off… Continue reading The Magic Pill: A new 21-day podcast challenge
Patients as Partners: Christel on “finding your tribe”
Today, we’re sharing the final piece of the Patients as Partners series from Christel, who’s living with type 1 diabetes. Christel has relied on several of the Partnership Principles including respect, communication, and shared responsibility throughout her journey. Below, see what she says about connecting with others who know what she’s going through and discovering… Continue reading Patients as Partners: Christel on “finding your tribe”
“I really felt that we were heard” — PatientsLikeMe staff member Dan shares his experience at the FDA psoriasis conference
August is Psoriasis Awareness Month, and we’re kicking things off with a recap from the FDA’s public meeting on psoriasis back in March. The meeting was part of their Patient-Focused Drug Development Series that aims to bring the patient voice to research. Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe notes that, “The… Continue reading “I really felt that we were heard” — PatientsLikeMe staff member Dan shares his experience at the FDA psoriasis conference
Patients as Partners: Doug on learning about himself through others
Next up in our Partnership Principles series is Team of Advisors member Doug (ducksixty). A writer and former actor, Doug tapped into his creative side and has shared a personal essay about Steve, a neighbor with fibromyalgia who unknowingly helped him realize something about his own experience with depression. Check out his story below and… Continue reading Patients as Partners: Doug on learning about himself through others
Sleep health: An interview with Dr. Lisa Shives from the National Sleep Foundation
How much do you know about sleep health? We’re digging deeper into how sleep relates to chronic illnesses in a new collaboration with the folks at the National Sleep Foundation (NSF), who are dedicated to improving health and well-being through sleep education. To kick things off and share what NSF is all about, we… Continue reading Sleep health: An interview with Dr. Lisa Shives from the National Sleep Foundation
14 questions to ask before you enroll in a clinical trial
Have you ever participated in a clinical trial? How much did you know going into it? Our partners over at the Center for Information and Study on Clinical Research Participation (CISCRP) came up with a whole list of questions that will help you decide if a clinical trial is right for you before you commit.… Continue reading 14 questions to ask before you enroll in a clinical trial
PatientsLikeMe Names Marni Hall Senior Vice President
Former Director within the FDA to Spearhead Company’s Research and Policy Initiatives CAMBRIDGE, Mass., July 11, 2016—PatientsLikeMe announced today it has appointed Marni Hall, PhD, MPH, as its new Senior Vice President of Research and Policy. A distinguished research scientist and public policy expert, Hall will develop and direct the strategies and teams focused on… Continue reading PatientsLikeMe Names Marni Hall Senior Vice President
Patients as Partners: How Phyllis is bringing the patient perspective to future doctors
Team of Advisors member Phyllis is living with Cutaneous T-Cell Lymphoma (CTCL) as well as Hodgkin’s lymphoma. In the latest edition of of our Partnership Principles series, she tells us how she works with med school students at the University of Pennsylvania in a patient shadowing program. The goal is to help the next generation… Continue reading Patients as Partners: How Phyllis is bringing the patient perspective to future doctors