IPF

“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

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 »

Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF

On September 26th I was at the FDA for the Patient-Focused Drug Development Public Meeting on IPF. This is one of 20 meetings that the FDA is holding to learn directly from patients and their caregivers about daily life with the specific condition’s symptoms and treatments. (You can learn more about these meetings here.) I have attended

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Shining the spotlight on pulmonary fibrosis

  You may have seen our post on Pulmonary Fibrosis Awareness Day, but did you know September is also Pulmonary Fibrosis Awareness Month? The Pulmonary Fibrosis Foundation (PFF) wants everyone to shine the spotlight on idiopathic pulmonary fibrosis (IPF), and many PatientsLikeMe members have already shared their stories – Lori documented her journey from diagnosis

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Let the world know about pulmonary fibrosis

On Rare Disease Day back in February 2013, we announced our partnership with Boehringer Ingelheim to help enhance the online idiopathic pulmonary fibrosis (IPF) community. And by September 7th that same year, the community had grown to just over 1,000 people. Today, on the next edition of Global Pulmonary Fibrosis Awareness Day, the community stands 2,500+

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“No oxygen.” PatientsLikeMe member Lori shares about life after surviving idiopathic pulmonary fibrosis

It’s crazy to think how fast things can happen. The last time we talked with Lori, she was telling us about life on the lung transplant list and playing what she called “the waiting waltz.” And now – everything has changed. Just two weeks after we posted her third interview on the PatientsLikeMe blog in

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The Patient Voice- PF member Bryan shares his story

  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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“Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF

PatientsLikeMe member Barbara (CatLady51) recently shared about her journey with idiopathic pulmonary fibrosis (IPF) in an interview with us, and she spoke about everything from the importance of taking ownership of managing her condition to how she hopes to “turn on the light bulb” by donating her personal health data. Read her full interview about

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Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at

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Uniting for hope on Rare Disease Day 2014

Today, healthcare professionals, research advocates and many people living with rare conditions are coming together to observe Rare Disease Day. It’s all about raising awareness for rare and genetic diseases, improving access to treatments and learning more about what exactly makes a condition rare. In the United States, a disease is considered rare if it

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