Excerpt from: The Balancing Act (click for full article and video)
Did you know that rare diseases affect 1 in 10 Americans? One of them, called idiopathic pulmonary fibrosis (IPF) affects approximately 200,000 Americans. Although there is no cure to date, there is hope. The Pulmonary Fibrosis Foundation is the largest international organization working to help find a cure for idiopathic pulmonary fibrosis (IPF), advocate for the pulmonary fibrosis community, promote disease awareness, and provide a compassionate environment for patients and their families.
There is a lack of newly published data to demonstrate an accurate estimate for the incidence of idiopathic pulmonary fibrosis (IPF) in the United States. The most recent estimates indicate that approximately 128,000 Americans have IPF (2), although there are published estimates that suggest the number may be as high as 200,000 (9). Varying terminology and lack of standard diagnostic criteria have complicated the accrual of accurate data.
More importantly, it is anticipated that the number of individuals diagnosed with IPF will continue to increase. This will be a result of people living longer, and an improved clinical understanding of IPF which will lead to earlier and more accurate diagnosis.