Search Results for: pulmonary fibrosis

“Don’t go it alone” – IPF member Christine shares about her health journey

4 Comments / Patient Experiences, Pulmonary fibrosis / By

Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below, […]

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PatientsLikeMe members to be highlighted in patient empowerment webinar

Epilepsy, Idiopathic Pulmonary Fibrosis, Patient Experiences / By

Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar. On Tuesday, January 20th, at 2:00pm EST, the Partnership to

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“I continue to be inspired by those who share this fight with me” – PatientsLikeMe member Doug shares his journey with HP

4 Comments / Idiopathic Pulmonary Fibrosis, Patient Experiences / By

Meet Doug. He’s part of the pulmonary fibrosis (PF) community on PatientsLikeMe and is living with a condition specifically known as chronic hypersensitivity pneumonitis (HP). It’s similar to other types of PF, but also has its differences. We caught up with Doug for an interview to help spread the knowledge about these two conditions, but

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2014 recap – a year of sharing in the PatientsLikeMe community

ALS, Bipolar disorder, Diabetes, Epilepsy, Fibromyalgia, Idiopathic Pulmonary Fibrosis, Mental Health, Multiple Sclerosis, Parkinson's Disease, Patient Experiences, Pulmonary fibrosis / By

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys

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“We are many” – PatientsLikeMe member Laura reports back on her experiences as a panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF

1 Comment / Idiopathic Pulmonary Fibrosis, Patient Experiences, Pulmonary fibrosis / By

Just yesterday, you saw our very own Sally Okun RN, Vice President of Advocacy, Policy and Patient Safety, reported back about her experiences at the FDA Patient-Focused Drug Development Public Meeting on IPF. And today, we wanted to share the patient experience. For each public meeting, the FDA invites patients and caregivers to apply to

“We are many” – PatientsLikeMe member Laura reports back on her experiences as a panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF Read More »

PatientsLikeMe Develops Patient and Scientific Advisory Boards

Patient Experiences / By

Company Forms First Member-Based Team of Advisors, Names New Participants to ORE Scientific Advisory Board CAMBRIDGE, Mass.—September 17, 2014—PatientsLikeMe has formed its first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients. The company also named three new

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The Patient Voice- PF member Bryan shares his story

31 Comments / Idiopathic Pulmonary Fibrosis, Patient Experiences, Pulmonary fibrosis / By

  Since we announced #dataforgood back in March, many PatientsLikeMe members have been sharing about why they donate their own health experiences. Becca (fibromyalgia) and Ed (Parkinson’s) already shared their stories, and now we’re hearing from Bryan, an idiopathic pulmonary fibrosis (IPF) member. Check out his video above. Miss Becca or Ed’s? Watch them here.

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