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
Category: Patient Experiences
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
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
Migraine & Headache Awareness Month: New insights from a recent study
It’s National Migraine and Headache Awareness Month, so let’s help spread that awareness by sharing the results of a recent survey that 300 members from the migraine community on PatientsLikeMe took. For this study, we defined chronic migraine as having had 15 or more headaches in the past month. Here’s what members helped uncover: High level… Continue reading Migraine & Headache Awareness Month: New insights from a recent study
PatientsLikeMe Co-founder Ben Heywood reflects on a recent visit from Dr. Jill Biden
Last month, PatientsLikeMe was honored to host a special visitor — Dr. Jill Biden was in town as part of the Cancer Moonshot Initiative announced by President Obama in his 2016 State of the Union Address. She made time to stop by our office to learn more about how PatientsLikeMe works and how members use… Continue reading PatientsLikeMe Co-founder Ben Heywood reflects on a recent visit from Dr. Jill Biden
Patients as Partners: An open letter from Craig to the “normals”
We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. For Craig (woofhound), who’s living with fibromyalgia, it’s important to forge strong relationships with “normals,” or people who don’t know what it’s like to live with a chronic condition. By talking openly about illness, Craig believes,… Continue reading Patients as Partners: An open letter from Craig to the “normals”
“TransFatty Lives”: An interview with ALS filmmaker Patrick O’Brien
Meet Patrick O’Brien, a.k.a. “TransFatty,” whom we met through our friend and longtime PatientsLikeMe ALS member Steve Saling (Smooth S) after catching up with him earlier this year. Patrick is one of Steve’s housemates at the Steve Saling ALS Residence at the Chelsea Jewish Foundation’s Leonard Florence Center for Living and he’s also an award-winning filmmaker. Back… Continue reading “TransFatty Lives”: An interview with ALS filmmaker Patrick O’Brien