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”
patientslikeme
“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
Patients as Partners: Cyrena on connecting through social media
Earlier this month, Team of Advisors member Cyrena shared how she relies on many of the Partnership Principles in her interactions with her physicians. Today, she offers some insight into a different type of relationship in our health journeys — the ones we have on social media. In addition to PatientsLikeMe, Cyrena is active on… Continue reading Patients as Partners: Cyrena on connecting through social media
Treating PTS: What members said in a recent study
June is National PTSD Awareness Month, so we’re shedding some light on what it’s really like to live with post-traumatic stress (PTS). At the end of last year, we teamed up with our partners at One Mind to better understand what it’s like for PTS patients to treat their condition. Nearly 700 members of PatientsLikeMe’s… Continue reading Treating PTS: What members said in a recent study
Patients as Partners: Member Laura on launching a PF support group
Over the past few months, the Team of Advisors has been sharing how they use the Partnership Principles in their personal health journeys. Laura, who’s living with IPF, recently sat down with us to talk about the New Britain PF Support Group she launched in Connecticut, and how important it is to have a community… Continue reading Patients as Partners: Member Laura on launching a PF support group