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About Idiopathic Pulmonary Fibrosis
According to the National Institutes for Health (NIH) website, idiopathic pulmonary fibrosis (IPF) affects
200,000 Americans.4,6 IPF is a condition in which the lung tissue becomes thickened, stiff, and scarred.4
The development of the scar tissue is called fibrosis. As lung tissue becomes scarred and thicker, it loses
its ability to transfer oxygen into the bloodstream. As a result, the brain and other organs may not receive
adequate amounts of oxygen. In some cases, doctors can determine the cause of the fibrosis, but in most
cases, there is no known cause. When there is no known cause for the fibrosis, and certain pathologic
criteria are met, the disease is called idiopathic pulmonary fibrosis or IPF.
A Snapshot of the Disease
The disease affects 200,000 Americans;4,6 alarmingly prevalence has increased as much as
150% percent since 20011,5
The median survival rate is only 2 to 3 years, and more than 2/3 of patients will die within 5
There is no FDA-approved treatment or cure for IPF
An estimated 40,000 people die each year from IPF – one every 13 minutes (the same
number that die annually from breast cancer)
An estimated 48,000 new cases are diagnosed each year4
IPF can affect anyone, but the disease tends to affect men more than women; the mean age
at the time of diagnosis is 60-70 but can occur at any age5
IPF is 5 to 6 times more common than cystic fibrosis, yet it remains virtually unknown to the
public, many policymakers, and even some physicians
About the Pulmonary Fibrosis Foundation
The mission of the Pulmonary Fibrosis Foundation (PFF) is to help find a cure for idiopathic pulmonary
fibrosis (IPF), advocate for the pulmonary fibrosis community both locally and in Washington D.C., promote
disease awareness, and provide a compassionate environment for patients and their families.
The Pulmonary Fibrosis Foundation’s ambitious agenda to further our mission includes:
Substantially increasing funding for IPF research and creating partnerships between the
academic research community and the biotech industry to help develop new therapies.
Promoting disease awareness and addressing the growing educational needs of the IPF
community by holding an international IPF conference - IPF Summit 2011: From Bench to
Bedside - for physicians, patients, family members, and caregivers.
Sponsoring a series of webinars to provide current information and research to physicians,
patients, family members, and caregivers throughout the world.
Establishing a Regional Affiliate Program that will allow the Foundation to reach out to the
patient community, expand fundraising, increase advocacy, and enhance disease awareness.
Continuing our commitment to strongly advocate for the IPF community both locally and in
Aggressively increasing public awareness and engagement through a series of public service
announcements and an interactive social media campaign.
Some of the Pulmonary Fibrosis Foundation’s Accomplishments
Creating our inaugural health care conference, IPF Summit 2011: From Bench to Bedside, to
be held on December 1 – 3, 2011;
Partnered with the American Thoracic Society to award $200,000 in new research grants;
Expanded assistance to patients and families through the creation of active support groups in
the United States, Canada, and the United Kingdom;
Implemented social media campaigns to increase IPF awareness, engage patients and family
members, and fundraise;
Created an internationally respected Medical Advisory Board of prominent pulmonary
physicians, nurses, and respiratory therapists to direct our research grants and educational
Awarded more than $2,900,500 in new research grants to leading medical centers in the
Provided $1 million to the University of Chicago to establish an Interstitial Lung Disease
Created two national fundraising and awareness campaigns that have raised over $500,000.
Ganesh Raghu, M.D., Derek Weycker, Ph.D., John Edelsberg, M.D., M.P.H., Williamson Z. Bradford, M.D., Ph.D., Gerry
Oster, Ph.D.; Incidence and Prevalence of Idiopathic Pulmonary Fibrosis; AJRCCM: doi:10.1164/rccm.200602-163OC.
Published June 29, 2006: (Utilization data revised to NIH estimated prevalence of 128,000/200,000 prevalence & annual
cost of 33734 per patient using broad definition.)
American Lung Association Lung Disease Report, c. 2008
National Institutes of Health: Estimates of Funding for Various Diseases, Conditions, Research Areas
National Institutes of Health web page (www.nhlbi.nih.gov), 2010
American Thoracic Society. Idiopathic pulmonary fibrosis: diagnosis and treatment (international consensus
statement). Am J Respir Crit Care Med. 2000;161:646-664.
Coultas DB, Zumault RE, Black W, Sobonya RE. The epidemiology of interstitial lung diseases. Am J Respir Crit Care Med.