May is Cystic Fibrosis (CF) Awareness Month and the Cystic Fibrosis Foundation (CFF) is working to “shine a spotlight on what CF is and the progress being made toward a cure.” The CFF has a terrific awareness page where you can find info on ways to get involved, like: Walk in Great Strides, “Take Action”… Continue reading “Shine a spotlight” and raise awareness for Cystic Fibrosis
Category: Patient Experiences
PatientsLikeMe RFP for PCORI Funding
Last month, the Patient Centered Outcomes Research Institute (PCORI) released a funding announcement entitled, “The National Patient-Centered Clinical Research Network: Patient-Powered Research Networks (PPRNs)—Phase One.” Through this solicitation, PCORI seeks to establish a set of Patient-Powered Research Networks (PPRNs) that complement PCORI efforts to establish a national infrastructure of Clinical Data Research Networks through a… Continue reading PatientsLikeMe RFP for PCORI Funding
“I still haven’t given up hope.” An interview with psoriasis and psoriatic arthritis patient David
Say ‘hi’ to David. Some of you may know him on PatientsLikeMe as db.09. He developed his first visible symptom of psoriasis at the very young age of 3. Now 22, he’s sharing his personal journey with this highly stigmatized autoimmune condition, along with psoriatic arthritis and Chron’s. See how his conditions have actually given… Continue reading “I still haven’t given up hope.” An interview with psoriasis and psoriatic arthritis patient David
Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”
In this second interview of our three-part series, Keith and Sarah talk about how their daily lives changed and the importance of connecting with others. If you missed our first interview with Keith and Sarah, you can find it here. What were the most noticeable changes you had to make in your daily life? [Keith]… Continue reading Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”
International Clinical Trials Day: Raising awareness and forging new partnerships
Did you know that May 20th was chosen for International Clinical Trials Day because it’s the same day James Lind began his trial on scurvy? When it comes to drug development, clinical trials are an essential way to get direct feedback from patients. That’s why PatientsLikeMe is developing new tools and forging new partnerships. We’ve… Continue reading International Clinical Trials Day: Raising awareness and forging new partnerships
PatientsLikeMe Calls For Researcher Participation in New Open Research Exchange™ Platform
Company Names Scientific Advisory Board for World’s First Open-Participation Research Platform for Patient-Centered Health Outcome Measures CAMBRIDGE, Mass.— May 20, 2013—Today, PatientsLikeMe announces an open call for medical researchers to be among the first pilot users of its Open Research Exchange™ (ORE) platform (www.openresearchexchange.com). ORE puts patients at the center of the clinical research process… Continue reading PatientsLikeMe Calls For Researcher Participation in New Open Research Exchange™ Platform
“Make memories starting now!” An interview about idiopathic pulmonary fibrosis with Kim Durand
Many of you have seen our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. Well for the first time on our blog, we’re talking with a “Facebooker.” Kim started her Facebook page, Pulmonary Fibrosis Awareness, after her… Continue reading “Make memories starting now!” An interview about idiopathic pulmonary fibrosis with Kim Durand
“Not in this fight alone.” An interview with multiple sclerosis patient Monica
Say ‘hello’ to Monica. Some of you may know her on PatientsLikeMe as msajstall. She was diagnosed with multiple sclerosis (MS) back in 2005 and has been a member of the PatientsLikeMe community for 6 years now. She recently took some time to talk with us about her diagnosis, finding the right healthcare coverage and… Continue reading “Not in this fight alone.” An interview with multiple sclerosis patient Monica
Raising awareness for peripheral neuropathy, one picture at a time
Neuropathy Awareness Week is May 13th-17th and The Neuropathy Association has dedicated a page of its website to those who are getting involved. You’ll find images of people who are helping raise awareness at events all over the country. They’ve also created a list of upcoming events including a walk-a-thon and live Facebook chat. Close… Continue reading Raising awareness for peripheral neuropathy, one picture at a time
“Pathways to Wellness” Raising awareness for mental health
Mental Health America has been raising awareness for those with mental illness each May for more than 60 years, and this year’s theme is Pathways to Wellness. Here are just a few of their ‘key messages’ for the month… Wellness – it’s essential to living a full and productive life It’s more than an absence… Continue reading “Pathways to Wellness” Raising awareness for mental health