PatientsLikeMe has a long tradition of bringing the patient voice into drug discovery and development, but it’s only been in the last year or two that industry has been tuning in to hear what that voice is saying about clinical trials. For the last 18 months, we’ve been asking many of our members about their… Continue reading Bringing the patient voice to clinical trials
Category: Patient Experiences
Global PF Awareness Month: An interview with Dr. Cosgrove from the Pulmonary Fibrosis Foundation
September is Global PF Awareness month, and a few weeks ago, members of the PatientsLikeMe PF community helped us kick it off by sharing in their own words what it’s like to live with this condition. The month is winding down now, so we caught up with our partners at the Pulmonary Fibrosis Foundation (PFF) to learn… Continue reading Global PF Awareness Month: An interview with Dr. Cosgrove from the Pulmonary Fibrosis Foundation
Redefining Patient Partnerships: Looking back on the 2015-2016 Team of Advisors
It’s been quite a year for the 2015–2016 Team of Advisors. This year’s team was tasked with bringing the patient voice to a central issue in healthcare: how to redefine patient partnerships. Over the past several months, they’ve worked together to rethink what it means for patients to be partners and establish new ways for… Continue reading Redefining Patient Partnerships: Looking back on the 2015-2016 Team of Advisors
“I have learned and grown from this and now I want to help others” — Iris shares her story for Ovarian Cancer Awareness Month
September is Ovarian Cancer Awareness Month, so we caught up with member Iris (Imartinez) to find out what living with this condition is really like. Iris opened up about getting diagnosed at just 28 years old, the challenges of her treatment journey and her passion for riding her motorcycle. For Iris, attitude is everything: “Having… Continue reading “I have learned and grown from this and now I want to help others” — Iris shares her story for Ovarian Cancer Awareness Month
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
“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
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
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