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Coalition for Pulmonary Fibrosis Announces September as National PF Awareness Month(September 06, 2013)
WASHINGTON, Sept. 6, 2013 (GLOBE NEWSWIRE) -- The Coalition for Pulmonary Fibrosis (CPF) announces its second annual "National Pulmonary Fibrosis Awareness Month", which runs the entire month of September. Highlights of the month's efforts include a congressional briefing, patient advocate meetings on Capitol Hill and a patient education day to be co-hosted with the American Thoracic Society and Johns Hopkins University School of Medicine.
Pulmonary Fibrosis (PF) is a deadly lung disease that affects at least 128,000 Americans and has no FDA approved treatment and no cure. Each year, 40,000 people lose their lives to PF – the same number as breast cancer.
The CPF held National PF Awareness weeks for a decade and then expanded the effort to a month in 2012. CPF Patient Advocates will meet with members of Congress and their staffs on Capitol Hill in Washington, D.C. on September 18th and 19th. Those meetings focus on the dire need for increased Congressional attention to the disease.
The CPF will partner with Senator Christopher Coons (D-DE) and the American Thoracic Society (ATS) to co-host a congressional briefing on Capitol Hill on Thursday, September 19th in the Capitol Visitor's Center building.
From September 22-28 the ATS will celebrate PF Week in partnership with the CPF by holding a patient event in Baltimore, MD (see information further down), webcasting a portion of the event and by setting up a web page for updated information for patients and medical professionals on PF. The ATS is the CPF's research partner and the largest organization of pulmonary medicine physicians and researchers in the world and this is the third year the ATS and CPF have had a joint week of recognition for this disease. Archives for webcast events from 2011 and 2012 on important PF topics are available:
2012 archive link (includes webcast): http://patients.thoracic.org/lung-disease-week/2012/pulmonary-fibrosis-2012/index.php
2011 archive link (includes webcast): http://patients.thoracic.org/lung-disease-week/2011/pulmonary-fibrosis-week/index.php
The ATS and CPF will co-host the patient event with Johns Hopkins University School of Medicine that will held at the Johns Hopkins Bayview campus in Baltimore, MD. The effort will bring patients, families and caregivers together with PF experts that will provide information and education on the disease. The location for the event is the Johns Hopkins Asthma and Allergy Center Auditorium, 5501 Hopkins Bayview Circle, Baltimore, MD 21224 and will be from 9 a.m. to 2 p.m. on Saturday, September 21st. A portion of event will also be webcast live and archived following the event. For more information, visit www.thoracic.org.
"We are honored to partner with the ATS and Johns Hopkins to bring PF information to patients and families during PF Awareness Month." said CPF Chief Executive Officer Mishka Michon. "Our efforts are made successful by the direct involvement of patients. We encourage anyone who has been touched by the disease, past or present, to speak out."
About Pulmonary Fibrosis (PF) Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring – known as fibrosis – and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 128,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).
About the CPF The CPF is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The 'PF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 27,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.
A photo accompanying this release is available at: http://www.globenewswire.com/newsroom/prs/?pkgid=20831
CONTACT: Teresa Barnes
Coalition for Pulmonary Fibrosis
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