Idiopathic pulmonary fibrosis

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 …

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“My new normal.” PatientsLikeMe member Jeff tells his personal journey with interstitial lung disease

12 Comments / Patient Experiences / By

Have you met PatientsLikeMe member Jeff, also known as NinerFan? He has been living with interstitial lung disease (ILD) since 2004 and he recently took some time to share his journey with us. He spoke about everything from getting diagnosed to being a newlywed, and gave a great list of advice for others going through a …

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“Retooling my attitude.” An interview with idiopathic pulmonary fibrosis patient & PatientsLikeMe member Lori

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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 …

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

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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 …

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

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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] …

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“Make memories starting now!” An interview about idiopathic pulmonary fibrosis with Kim Durand

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

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 …

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“Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant

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“Short of Breath? See your Doctor,” said the poster in the pharmacy. I’d been short of breath for some time, but put it down to an unhealthy lifestyle, being 58 and being overweight. The poster encouraged me to visit my doctor, which I did. He sent me for a chest X-ray and I could tell …

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PATIENTSLIKEME AND BOEHRINGER INGELHEIM ESTABLISH HEALTH INFORMATION COLLABORATION FOR PATIENTS WITH IDIOPATHIC PULMONARY FIBROSIS

Patient Experiences / By

CAMBRIDGE, Mass. — February 28, 2013—On Rare Disease Day®, PatientsLikeMe announces a new collaboration with Boehringer Ingelheim to enhance its online patient community for people with idiopathic pulmonary fibrosis (IPF), a rare lung condition with no known cause, treatment or cure. Through a customized experience on PatientsLikeMe, IPF patients can now monitor their health and …

PATIENTSLIKEME AND BOEHRINGER INGELHEIM ESTABLISH HEALTH INFORMATION COLLABORATION FOR PATIENTS WITH IDIOPATHIC PULMONARY FIBROSIS Read More »

A Day in the Life of Health Data and Patient Safety Clinical Specialist Christine Caligtan

Epilepsy, Patient Experiences, Research / By

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features PatientsLikeMe employees from different departments.  Today we’d like to introduce you to Christine Caligtan, RN, MSN, a registered nurse who has served as our Health Data and Patient Safety Clinical …

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