rare lung disease

PatientsLikeMe creates largest open registry of IPF patients in the world

Idiopathic Pulmonary Fibrosis, Pulmonary fibrosis / By

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 […]

PatientsLikeMe creates largest open registry of IPF patients in the world Read More »

Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”

2 Comments / Idiopathic Pulmonary Fibrosis, Patient Experiences, Pulmonary fibrosis, Rare Diseases / By

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

Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round” Read More »

Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”

2 Comments / Idiopathic Pulmonary Fibrosis, Patient Experiences, Pulmonary fibrosis, Rare Diseases / By

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]

Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies” Read More »

Keith & Sarah’s personal journey with rare lung disease. Part I, “Fine”

Idiopathic Pulmonary Fibrosis, Patient Experiences, Pulmonary fibrosis, Rare Diseases / By

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 Sarah and Keith. Sarah started writing about her fiancé Keith’s journey with a rare lung disease back in July

Keith & Sarah’s personal journey with rare lung disease. Part I, “Fine” Read More »

Scroll to Top