CAMBRIDGE, Mass. ——
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 for sometime but put it down to an unhealthy lifestyle. My doctor explained the X- ray had shown I had 'stiff' lungs and that I should see a specialist," says 61-year old Ian Bannister, who was diagnosed with IPF in March 2010 and received a lung transplant a year later. He adds, "When you get a diagnosis like IPF, the first thing you do is look on the Internet for information. I wanted to hear directly from people who were either living with it or who had managed to get transplants. PatientsLikeMe is a great idea and gives you direct access to people who are, or have been, in the same situation as you."
People who have any form of pulmonary fibrosis, including IPF, can join PatientsLikeMe for free at http://www.patientslikeme.com/join/ipf.
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 30 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.