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Month-long Efforts Boost Little Known Disease that Claims as Many Lives as Breast Cancer(October 03, 2013)
WASHINGTON, Oct. 3, 2013 (GLOBE NEWSWIRE) -- The Coalition for Pulmonary Fibrosis (CPF) proclaimed its month-long efforts for awareness during September a success with important highlights such as a congressional briefing, 60 patient advocate meetings on Capitol Hill and a patient education day 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 200,000 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.
CPF and patient advocates met with 60 members of Congress and their staffs on Capitol Hill in Washington, D.C. on September 18th and 19th. Those meetings were with members of Congress serving on key health-related committees or subcommittees and focused on the dire need for increased Congressional attention to the disease. The CPF partnered with Senator Christopher Coons (D-DE) and the American Thoracic Society (ATS) to co-host a congressional briefing on Capitol Hill that brought together patients, advocates, and Members of Congress and their staffs.
The ATS celebrated PF Week in partnership with the CPF by holding a patient event in Baltimore, MD, 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.
The 2013 webcast will be posted soon to the same section of the ATS site:
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
"We were pleased with the progress made on and off Capitol Hill by our patients and advocates," said CPF Chief Executive Officer Mishka Michon. "We are fortunate to have such vigorous champions for the cause as Senator Coons and Congressman Paulsen."
The CPF instituted National PF Awareness Week more than a decade ago and expanded the effort to the month of September in 2012.
To join the CPF's efforts for National PF Awareness Month, email the organization at firstname.lastname@example.org or visit www.coalitionforpf.org to learn more.
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 200,000 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.
CONTACT: Teresa Barnes
Coalition for Pulmonary Fibrosis
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