National Institutes of Health

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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