12 posts from September, 2014

Let the world know about pulmonary fibrosis

Posted September 7th, 2014 by

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+ members strong, making it the largest online gathering of IPF patients anywhere in the world. In just a year, the community has almost tripled in size, and everyone is sharing about their experiences so that other patients, doctors and researchers can learn more about life with IPF.

But what exactly is IPF? Pulmonary fibrosis (PF) is a medical condition that causes lung tissue to thicken, stiffen and scar over a period of time, and “idiopathic” means “no known cause.” According to the Coalition for Pulmonary Fibrosis, there are over 100,000 Americans living with IPF at any given time, and an estimated 40,000 will die from the condition every year. And besides a complete lung transplant, there is no known cure for IPF.1

Today, the Pulmonary Fibrosis Foundation (PFF) is encouraging everyone to educate, share, fundraise and start conversations about IPF. You can learn more about how to get involved through the PFF’s toolkit and guidelines for September.  And if you or someone you know has been diagnosed with IPF, join the community at PatientsLikeMe – let’s change who knows about this condition and promote a better understanding of IPF all year round.

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1 http://www.coalitionforpf.org/facts-about-idiopathic-pulmonary-fibrosis/


Throwback Thursday: Jamie talks about the future of medicine

Posted September 4th, 2014 by

It’s Throwback Thursday, so today we decided to share a talk our founder, Jamie Heywood, gave at the Government 2.0 Summit back in September 2009. He spoke about how we can better answer this question for patients:  “Given my status, what is the best outcome I can achieve and how do I get there?”  Watch what else he had to say below:

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