Boehringer Ingelheim

As 2013 winds down… Part II

When we kicked off 2013 back in January, we shared that what inspires everyone at PatientsLikeMe to live better is YOU. We also renewed our promise to continue putting patients first, and a couple days ago we posted on the blog about just some of  the ways the community has continued to change healthcare for good by adding their voices to real-time research and sharing personal health experiences.           In just this last year, PatientsLikeMe… worked with the Alkaptonuria (AKU) Society to create the first open registry for AKU patients met up with four members at the World Parkinson’s Conference to learn more about their experiences face to face collaborated with the U.S. Department of Veterans Affairs’ Epilepsy Centers of Excellence (ECoE) and biopharmaceutical company UCB on a study to better understand what factors improve health outcomes for veterans living with epilepsy showed how we can get the patient voice front and center during Sally Okun’s TEDMED talk partnered with Aetna to help their members improve the way they live with various health conditions created the world’s first open research platform with an awarded grant of $1.9 million from The Robert Wood Johnson Foundation (RWJF) brought the …

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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 has shared is providing new clues about the condition and giving a rare look into what it is like to live daily with a disease that has no known cause or cure. According to the National Institutes of Health, pulmonary fibrosis causes scarring in deep lung tissue over time, making it harder for the lungs to move oxygen into the bloodstream. Cases where the cause of the disease is unknown are called IPF and usually affect middle-aged and older adults, more typically men, and an estimated 100,000 people in the United States. The company’s focus on IPF accelerated earlier this year when it announced a collaboration with Boehringer Ingelheim to enhance its IPF patient community. Now more than 900 IPF patients use PatientsLikeMe to monitor their health and share information about their experiences with the condition. They can also connect with others like them and …

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

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 progress over time and connect with others to learn more about the condition. “We are excited to partner with Boehringer Ingelheim, a leading pharmaceutical company, to support this patient initiative,” says PatientsLikeMe Co-founder and President Ben Heywood. “Rare diseases are sometimes called ‘orphan diseases’ because they affect so few people, and don’t attract significant research attention or funding. Our website is where patients count. They’re contributing their real-world experience to help others living with IPF and advance research.” According to the National Institutes of Health, pulmonary fibrosis is a disease in which deep lung tissue becomes scarred over time, making it harder for the lungs to move oxygen into the bloodstream. Cases where the cause of the disease is unknown are called IPF and usually affect middle-aged and older adults, in all an estimated 100,000 people in the United States. “I’d been short of breath …

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