Do you know someone with pulmonary fibrosis? Thanks to the Pulmonary Fibrosis Foundation, today – Sept 7th – is dedicated to raising awareness about this condition and sharing the stories of patients living with PF. It’s Global Pulmonary Fibrosis Awareness Day, and we want to do our part to help raise awareness of this lung condition. Pulmonary… Continue reading It’s Global Pulmonary Fibrosis Awareness Day!
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
PatientsLikeMe creates largest open registry of IPF patients in the world
Community One of Website’s Fastest Growing; Reveals Real-World Picture Of Daily Life With the Rare Lung Disease CAMBRIDGE, Mass.— August 22, 2013—In a few short months, PatientsLikeMe has created the largest open registry of idiopathic pulmonary fibrosis (IPF) patients online, and some of the most current patient-reported data on the disease. The information the community… Continue reading PatientsLikeMe creates largest open registry of IPF patients in the world
“Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted.
For our latest patient spotlight interview, we’re talking with Ted. Some of you may know him on PatientsLikeMe as sirsmedley’s and he’s been sharing his journey with the community since 2010. Ted was diagnosed with multiple sclerosis (MS) back in 2009 and he recently took some time to talk with us about a bunch of… Continue reading “Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted.
“Retooling my attitude.” An interview with idiopathic pulmonary fibrosis patient & PatientsLikeMe member Lori
As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Lori, an idiopathic pulmonary fibrosis (IPF) patient who started blogging about her journey back in October 2011. Her blog is… Continue reading “Retooling my attitude.” An interview with idiopathic pulmonary fibrosis patient & PatientsLikeMe member Lori
Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”
Over the last few months, Keith and Sarah have been sharing their journey with us. In this final interview of our three-part series, they talk about how he got on a transplant list and their “phones at the dinner table” policy. If you missed our first two interviews with Keith and Sarah, you can find… Continue reading Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”
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
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”
“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
Raising awareness for amyotrophic lateral sclerosis
May is amyotrophic lateral sclerosis (ALS) Awareness Month. As many out there know, PatientsLikeMe was inspired by the life experiences of Stephen Heywood, who was diagnosed with this serious neurological disease back in 1998. Stephen’s brothers (Ben and Jamie) made many attempts to slow the progression of his condition, but their trial-and-error approach just wasn’t… Continue reading Raising awareness for amyotrophic lateral sclerosis
“I choose hope.” Interview with Multiple Sclerosis Blogger Tricia
In our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Tricia who’s writing about her journey with multiple sclerosis (MS) on her blog Love My MS Life. Some of you may… Continue reading “I choose hope.” Interview with Multiple Sclerosis Blogger Tricia