PFF Launches First Communication Center

Apr 28, 2014, 13:19 PM
announcement_icn_29

FOR IMMEDIATE RELEASE

Contact:
Patti Tuomey
President and Chief Operating Officer
312.239.6724
ptuomey@pulmonaryfibrosis.org

 

PULMONARY FIBROSIS FOUNDATION LAUNCHES FIRST COMMUNICATION CENTER FOR THE PULMONARY FIBROSIS COMMUNITY

 

CHICAGO, March 27, 2014/PR Newswire/-- Patients with pulmonary fibrosis (PF), their caregivers, family members, and health care providers will now be able to access a centralized communications center. Established by the Pulmonary Fibrosis Foundation (PFF), the leading pulmonary fibrosis patient advocacy organization, the PFF Patient Communication Center (PCC) will be the first-ever comprehensive communication resource that will be available to the PF community.

This major initiative will create a dedicated call center that will be staffed by health care professionals and offer all-inclusive educational resources. The PCC’s goal is to make available the most up-to-date medical information, communicate the availability of support services, and provide information about other essential resources important to patients, caregivers, and health care providers. The PCC will also offer current information on available treatments and clinical trials.

“As a rare disease, pulmonary fibrosis is often misdiagnosed or undiagnosed. Obtaining the most accurate and current information is often a difficult and frustrating process. People aren’t sure what questions to ask. The PFF Patient Communication Center is a big step forward in providing accurate and up-to-date information to patients,” said Gregory P. Cosgrove, MD, newly appointed Chief Medical Officer for the Foundation. Dr. Cosgrove is Associate Professor of Medicine in the Division of Pulmonary, Critical Care, and Sleep Medicine at National Jewish Health and University of Colorado-Denver in Denver, CO.

“The Pulmonary Fibrosis Foundation is proud to be the first PF patient advocacy organization to offer comprehensive communications services to the PF community. It fulfills our mission of increasing disease awareness and assisting those living with PF,” said Patti Tuomey, EdD, President and Chief Operating Officer. “The PCC is another important initiative under the Foundation’s umbrella of programs that provide education and support, and we know it will offer significant value to the PF community.”

The PFF Patient Communication Center will be based in Chicago at the national headquarters of the Pulmonary Fibrosis Foundation. The Center will be staffed Monday through Friday 9:00 a.m. – 5:00 p.m. (Central Time). The toll-free number is 844.TalkPFF (844.825.5733).

For more information about the Pulmonary Fibrosis Foundation, or to make a donation, please visit www.pulmonaryfibrosis.org.

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, promote disease awareness, and provide a compassionate environment for patients and their families. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. PFF Summit 2015: From Bench to Beside, the PFF’s third biennial international scientific 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.

 

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