CHICAGO, Nov. 5, 2015 /PRNewswire-USNewswire/ -- The Pulmonary Fibrosis Foundation (PFF), the leading pulmonary fibrosis resource, today announced that Genentech, a leading biotechnology company and a member of the Roche Group, will be the Founding Partner for the PFF Patient Registry program currently in development. Genentech will provide funding to the PFF Patient Registry and to the signature programs of the PFF Care Center Network (CCN).
"We are thrilled with Genentech's unrelenting commitment to the PF community, which will continue to make a significant difference in the lives of those affected with PF," said Patti Tuomey, EdD, president and chief executive officer of the PFF. "As the Founding Partner for the PFF Patient Registry, Genentech's support is invaluable as we work to grow our key programs aimed at advancing patient care and providing critical support for patients and their families."
The PFF's mission is to raise awareness, provide disease education and advance care and funding research for the pulmonary fibrosis (PF) community. In support of its mission, the PFF plans to launch a national PFF Patient Registry, which will collect patient data to facilitate ongoing research. The PFF Patient Registry will allow researchers, through the generous contribution of medical data by patients, to gain a better understanding of how different forms of PF progress, who is affected by PF and how patients respond to different therapeutic regimens. Data from the Registry will help to inform best practices in care and identify potential treatment targets.
Medical centers that are a part of the PFF Care Center Network (CCN) will have the option of applying to participate in the PFF Patient Registry. Announced in 2013, the CCN is currently comprised of 21 medical centers in 20 states around the country that use a multidisciplinary, collaborative approach to deliver comprehensive care to patients living with PF and offer access to important support services for patients and their families. Plans are currently underway to expand the CCN to 40 sites by the end of the year.
The PFF offers essential programs available online and/or in person to those living and working with pulmonary fibrosis. These signature programs that will receive further funding from Genentech include the PFF Ambassador program, the PFF Support Group Leader Network, the PFF Disease Education Webinar Series and disease education materials.
PF is a devastating group of relentlessly progressive diseases, with no known cure.
For more information about the PFF Care Center Network and the PFF Patient Registry or to make a donation, please visit www.pulmonaryfibrosis.org.
About Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is a condition in which, over a period of time, lung tissue becomes thickened, stiff and scarred. The development of the scar tissue is called fibrosis. As the lung tissue becomes scarred and grows thicker, the lungs lose their ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don't receive enough oxygen. In some cases, doctors can determine the cause of the fibrosis, but in many cases, there is no known cause. When the cause of the fibrosis is unknown (and certain pathologic or radiographic criteria are met), the disease is called idiopathic pulmonary fibrosis or IPF. There is no cure for IPF. Presently, there are two FDA-approved treatments for IPF in the U.S.
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, advancing care and funding research. The PFF collaborates with physicians, organizations, people with PF and caregivers worldwide. The Pulmonary Fibrosis Foundation has a four-star rating from Charity Navigator and is a Better Business Bureau accredited charity. The PFF Summit 2015: From Bench to Bedside, its third biennial international health care conference, will be held November 12-14, 2015 in Washington, D.C. For more information visit www.pulmonaryfibrosis.org or call 844.TalkPFF (844.825.5733) or +1 312.587.9272 from outside of the U.S.
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SOURCE The Pulmonary Fibrosis Foundation