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Pulmonary Fibrosis Foundation Announces New Programs, Redesigned Website

PFF Care Center Network expansion, Disease Education Webinar Series provide support to PF community


News provided by

The Pulmonary Fibrosis Foundation

May 14, 2014, 10:00 ET

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CHICAGO, May 14, 2014 /PRNewswire-USNewswire/ -- Continuing its ongoing commitment to the pulmonary fibrosis community, the Pulmonary Fibrosis Foundation (PFF) announces three new initiatives this week: expansion of the PFF Care Center Network, introduction of the Disease Education Webinar Series, and the launch of its new website.

PFF Care Center Network Expansion
The PFF will begin accepting applications on May 15 to expand the PFF Care Center Network. Introduced in December along with the PFF Patient Registry, the PFF Care Center Network is an expanding group of medical centers providing experience and expertise in treating patients with fibrotic lung diseases. These centers are dedicated to improving the clinical care of individuals living with this disease.

"The additional centers will expand the opportunities for collaboration among experts who are caring for pulmonary fibrosis patients," said Kevin R. Flaherty, MD, MS, Steering Committee Chairman of the PFF Care Center Network and the PFF Patient Registry. "Ultimately, the PFF Care Center Network will elevate the standard of care for every person living with pulmonary fibrosis."

Medical centers are invited to apply to become a PFF Care Center Network site at www.pulmonaryfibrosis.org/CCN. Following a peer review evaluation procedure, the selected sites will be announced in January 2015.

"The establishment and expansion of this program would not have possible without the support of our generous sponsors," said Daniel M. Rose, MD, Chief Executive Officer and Chairman of the Board.  "We would like to thank our lead sponsor, InterMune for their ongoing commitment to the PFF Care Center Network and the PFF Patient Registry programs."

PFF Disease Education Webinar Series Debut
Today, the PFF initiates its Disease Education Webinar Series. This program enables the PF community to learn and interact with leading pulmonary fibrosis specialists in a virtual environment. 

The first series topic, "What is Pulmonary Fibrosis?" presented by Gregory Cosgrove, MD, Chief Medical Officer takes place today at 11:oo a.m. CDT.  Individuals can register for the event at www.pulmonaryfibrosis.org/webinars. Immediately following the webinar, David Lederer, MD, MS, Senior Medical Advisor, will conduct a tour of the new website. This will be followed by a Q&A session. During the last week of May, the PFF will present "Ask a Doc: Clinical Trial Update."  Further details are available online.

PFF Redesigned Website
Also today, the PFF launches its newly redesigned website, located at the same web address, www.pulmonaryfibrosis.org.  Serving as the "around-the-clock" source for PF information, improvements include a streamlined look and easier navigation for the diverse PF audience that includes patients, caregivers, medical professionals and others interested in the disease. The design is responsive to whatever device is used to view the site - desktop, laptop, mobile phone or tablet.

"It was important for us to design a site that is graphically interesting, but we wanted more," said Patti Tuomey, EdD, President and Chief Operating Officer. "We're delivering an online presence that serves the PF community with information that is valuable and timely.  We want our community to think of it as their site."

The redesigned website enables the Foundation to better communicate with those impacted by PF about existing and new programs such as the PFF Care Center Network and the Disease Education Webinar Series.  David Lederer, MD, MS, Senior Medical Advisor says, "Making sure everyone has access to the newest and most accurate information is a cornerstone of the Foundation's mission and enables us to be the trusted resource for those living with pulmonary fibrosis."

About the Pulmonary Fibrosis Foundation
The mission of the Pulmonary Fibrosis Foundation (PFF) is to serve as the trusted resource for the pulmonary fibrosis (PF) community by raising awareness, providing disease education, and funding research. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. PFF Summit 2015: From Bench to Beside, the PFF's third biennial international health care conference, will be held November 12-14, 2015. For more information visit www.pulmonaryfibrosis.org or call 888.733.6741 or +1 312.587.9272 from outside of the US.

About Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is a condition in which over a period of time the lung tissue becomes thickened, stiff, and scarred. The development of the scar tissue is called fibrosis. As the lung tissue becomes scarred and thicker, the lungs lose their ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don't receive the oxygen they need. In some cases, doctors can determine the cause of the fibrosis, but in most cases, there is not a known cause. When there is no known etiology for the fibrosis (and certain pathologic or radiographic criteria are met), the disease is called idiopathic pulmonary fibrosis or IPF. IPF affects between 132,000-200,000 people in the United States (US), and between 37,000-40,000 people in the European Union (EU). The annual mortality is estimated to be 40,000 in the US, with an average survival of 2–3 years following diagnosis. There is no cure for IPF. There is presently no FDA-approved treatment for IPF in the US and limited therapeutic options available for individuals with mild-to-moderate IPF in the EU, Canada, and Asia.

Contact:
Michelle Michael
VP, Marketing & Communications
312-239-6628
[email protected]

SOURCE The Pulmonary Fibrosis Foundation

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