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CPF Updates Patient Education Materials to Meet Growing Demand for Pulmonary Fibrosis Information
Date:12/3/2008

SAN JOSE, Calif., Dec. 3 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) today announced the launch of its newly designed patient guide offered to patients and families fighting pulmonary fibrosis (PF), a devastating and ultimately fatal disorder characterized by progressive and relentless lung scarring and affecting more than 128,000 Americans. Prevalence and incidence of PF has increased more than 150 percent since 2000 and PF claims 40,000 lives each year - the same number as breast cancer.

"In addition to personally connecting with every patient who contacts the CPF, this guide serve as a wonderful resource for patients to take charge of their care and have a more informed discussion with their doctor about their condition," said Marvin Schwarz, MD, Chairman of the CPF and the James C. Campbell Professor of Medicine at the University of Colorado Health Sciences Center (Denver, CO).

The CPF, the nation's largest and most respected nonprofit organization fighting to cure PF, has seen a critical need for improved education and awareness of PF in the patient and medical communities since it was founded in 2001. In 2004, the CPF published results from its Basic Research Questionnaire that found an alarming need for educational materials specifically for PF, especially in the areas of lung transplant and oxygen management, while also finding that more than 50% of cases are initially misdiagnosed in the medical community, and that standards of medical care varied greatly.(1)

CPF educational materials are rigorously peer-reviewed by leading experts in the field of pulmonary fibrosis treatment and research. To date, the CPF has distributed its materials to thousands of PF patients and families, and to healthcare professionals. CPF educational materials are distributed free of charge, with the cost of the publications being covered by public support.

"We know from our experience in working with tens of thousands of PF patients throughout the United States that there remains a lack of information available on PF, and that many patients have never heard of the disease until they are diagnosed. This lack of awareness leads to myriad questions and concerns for patients and families, and the CPF is often their first point of contact outside their doctor visits to seek information and support," said Mishka Michon, chief executive officer of the CPF.

"We want to be sure every patient working with the CPF is receiving the highest quality care possible. To do that, we want to empower patients with up-to-date education and information so they can fully understand their disease, be proactive in asking questions of their pulmonologist, and ultimately improve their quality of life," said Michon.

The new CPF patient guide includes an overview of PF, common symptoms, diagnostic tests, treatment options, caregiver and patient support services, the role of pulmonary rehabilitation and supplemental oxygen in treating PF, and a comprehensive review of the lung transplantation process - currently the only treatment option known to extend the lives of PF patients. To view a copy of the CPF patient guide on our Web page, please visit www.coalitionforpf.org/cpf_patient_edu. To order a copy of our materials, please email us at info@coalitionforpf.org.

Supporting the CPF ensures that every newly diagnosed patient will be able to receive CPF educational materials free of charge at a time when they need them most. To learn how you can support our goal of providing education, support, and hope to those suffering from PF, please visit our Web page at www.coalitionforpf.org or call us at 888-222-8541.

About Pulmonary Fibrosis (PF)

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 IPF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. IPF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes pulmonary fibrosis 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 pulmonary fibrosis; 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 CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 16,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with pulmonary fibrosis. For more information please visit www.coalitionforpf.org or call (888) 222-8541.

(1) Respiratory Medicine: Volume 101, Issue 6, June 2007, Pages 1350-1354 Patient experiences with pulmonary fibrosis: Collard, Tino, Shreve, Michaels, Carlson, Schwarz

http://www.coalitionforpf.org/ofs/pdf/BRQRespiratoryMedicinePaper.pdf


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SOURCE Coalition for Pulmonary Fibrosis
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