The Daniel and Joan Beren Pennsylvania Idiopathic Pulmonary Fibrosis State Registry
 

The Daniel and Joan Beren Pennsylvania Idiopathic Pulmonary Fibrosis State Registry
Talk to a PA-IPF Coordinator by calling the PA-IPF Hotline  1-866-922-4IPF
A project of the University of Pittsburgh, University of Pennsylvania, Pennsylvania State Miton S. Hershey Medical Center, Temple University, Geisinger Medical System
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About PA-IPF

The Pennsylvania Idiopathic Pulmonary Fibrosis State Registry is a collaborative effort of five medical centers in the Commonwealth of Pennsylvania aiming to: increase awareness of IPF, provide compassionate care for patients and their families, and to improve access to care and research to patients with IPF and their families. Throughout this site you will be able to find an extensive range of information and opportunities in or around your community such as:

The PA-IPF is funded by the Pennsylvania Department of Health and by a donation from the Simmons Family.

New Video on Youtube about the PA-IPF event in Harrisburg please click here to view

daniel beren

We are saddened to announce
the passing of Daniel Beren on December 14, 2014.

Daniel Beren was instrumental in the creation of the Daniel and Joan Beren PA-IPF Registry in 2006 with the purpose of bringing together five academic centers in the Commonwealth of Pennsylvania to increase awareness of Idiopathic Pulmonary Fibrosis (IPF). This registry has provided awareness of IPF to patients and providers throughout Pennsylvania and access to these centers of excellence for IPF care.

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About IPF
Pulmonary Fibrosis is an insidious disease that attacks the air sacs of the lung.  The result is that scar tissue forms which make it very difficult to breathe. When the cause is unknown the disease is called Idiopathic Pulmonary Fibrosis (IPF).

While the disease can be handled for a period of time, in most cases, the disease is fatal.

Who Has IPF?

While there is not a precise figure, there are probably 100,000 patients with disease in the U.S. and our best guess is that 5,000 to 7,000 Pennsylvanians suffer from this disease.

The University of Pittsburgh Medical Center Hospital system suggested recently that the disease was more common then expected. Medical centers in Pennsylvania are striving to assess the extent of lung fibrosis in the Commonwealth of Pennsylvania to provide a better standard of care, diagnosis, and discover new therapeutic interventions.

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